Full Episode Transcript

Season 2 | Episode 3: Am I Going To Die Today? (with Dr. Virtaj Singh, M.D.)

Transcribed by: Eryn Strong, Hannah Rosentreter, Gina Marioni, Sonia Montejano, Elizabeth Jarvie, Kisa Nishimoto, Leina Megurikami and Jamie Fischer

Running Time: 1:23:21

Jodi-Ann Burey: You walked into the room and I was like, “Alright, Dr. Singh, what's going on? You got me in your office, am I dying or what?” And the first thing you said *chuckles*, in your very typical way, you said, “Well, you're not dying. But you do have a tumor in your spine.”

[Theme Music Begins]

Jodi-Ann Burey, as host: Welcome to Black Cancer. I'm creator and host Jodi-Ann Burey. In this episode, well, I guess I'm kind of the guest too, eh - a little yes and a little no. Today's actual guest is Dr. Virtaj Singh.

Dr. Virtaj Singh: Can you hear me, Jodi?

Jodi-Ann Burey: I can.

Dr. Virtaj Singh: Okay. Oh, I was hoping to not be on video. *laughs*

Jodi-Ann Burey: Oh, sorry, you don't have to be! 

Dr. Virtaj Singh: I just woke up. *both laugh*

Jodi-Ann Burey, as host: He's my physiatrist who also has a subspecialty in pain. After two years in and out of doctors offices, I found myself in his. And a year later, he's the one who ordered the MRI that found the tumor in my spine. This is the first episode of Black Cancer that's about my own story. It's also the first episode that does a really deep dive on a diagnosis journey: mine. And I hope this can be an offering that finding a care provider that provides, well, care - is possible. Normally, when I title each episode, I use an illustrated phrase from one of our guests. But this time, the title “Am I Going to Die Today?” came from me. In editing the episode, I realized how many times I looked to Dr. Singh to answer that question. I realized how many times I had to sincerely ask myself that question. Is the tumor going to kill me? Is surgery going to kill me? Is this depression going to cause me to kill myself? Are the cops, when encountering a Black woman crying by herself in her hotel room about all these questions swarming in her head—are they going to kill me first? 

Fearing for our bodies and our right to live seems to be the condition of Black life. And I'm tired. How Dr. Singh has and continues to show up for me gives my mind a place to rest. He's someone I can trust, who, as you will see, says things straight. Who has my back. Get it? Spine joke! *laughs* Here's my conversation with Dr. Singh. 

[Theme Music Fades Out]

Jodi-Ann Burey: I'm super excited to speak with you. I was sharing with a friend that you agreed to do this, and she was so excited and so shocked. *laughs*

Dr. Virtaj Singh: Why is it shocking? 

Jodi-Ann Burey: Well, I don't think a lot of people have relationships with their doctors. Right? 

Dr. Virtaj Singh: Yeah, I mean, I think in most cases, most people don't also have tumors that are just diagnosed in the middle of a, you know, “my elbow hurts” diagnosis.

Jodi-Ann Burey: That is true. Okay. So do you want to get started?

Dr. Virtaj Singh: Yeah, please.

Jodi-Ann Burey: Okay, so I actually want to start by sharing my perspective, like my side of how I even got to you. Because it's not like you were out here looking for patients, I came to you. *both chuckle* So by the time I met you, I had been in and out of different doctors’ offices for maybe two years, and trying to figure out what the heck was going on. And no doctor I found was particularly helpful. And I had, in this process, had learned even what a physiatrist was - like I had no clue of that specialty. 

And so given the unhelpfulness of that process, and a lot of trauma, I think in-it's hard to try to find answers and not find them, and then also feel like I wasn't being treated like my pain was serious. So that was really tough. And so I just took myself to PT. I was like, Who's referring you? Nobody's referring me. My body's telling me that something needs to happen, so I'm just going to show up. And so it's through meeting Corely, and she said, “Well, I think I can refer you to Dr. Singh.” And I was opposed to the whole idea because I was tired of being in doctors’ offices. And she said that you liked hard cases. And so I was envisioning you like a Dr. House-type guy. And so that-I was like Okay, well, that's cool. I watch House, maybe this will be interesting. And that's how I got into your office. *chuckles*

Dr. Virtaj Singh: That's interesting. I did not know that backstory...to that extent, at least.

Jodi-Ann Burey: Do you remember what Corely was sharing with you about my case?

Dr. Virtaj Singh: My recollection—and keep in mind I did go back and look through your files yesterday in anticipation of this visit—was that you were sent to me because you were having elbow pain going into your hand. And they were concerned about something called Cubital Tunnel Syndrome, which is where the nerve from your elbow sends a signal into your hands. So you're having some numbness and weakness in your hand, they thought it was Cubital Tunnel Syndrome. And I believe, if I'm not mistaken, you'd seen a surgeon who'd actually potentially offered you surgery for Cubital Tunnel Syndrome. Do I remember that correctly?

Jodi-Ann Burey: That is correct.

Dr. Virtaj Singh: Dr. Ruhlman, maybe?

Jodi-Ann Burey: Dr. Ruhlman, yes, had a really gross misunderstanding of what was happening to my body. But yeah.

Dr. Virtaj Singh: So after I examined you, I was of the opinion this didn't quite add up. I thought that was too simple of an explanation. And I examined you. And I said, I think this is coming from up higher. And I ended up thinking you had something called Thoracic Outlet Syndrome, which is another-which is a bit of an esoteric diagnosis, but could have actually made sense for the distribution of your symptoms, and how they were presenting. And I don't know if you recall, I did a diagnostic block at that first visit. [Jodi-Ann: Yep.] And you actually felt a lot better when I did it. So I took the pressure off the nerves up in your neck [Jodi-Ann: Mmhmm.] and you felt 90% better. So I sort of honed in on this diagnosis of Thoracic Outlet Syndrome. And sort of that's-that's how I recall our first visit going. [Jodi-Ann: Yeah.] I recall from the record, wondering whether or not I should get an MRI of your neck. In hindsight, obviously, I wish I'd have done that. My recollection, and correct me if I'm wrong, is that you weren't really having any neck pain. Is that your recollection, Jodi-Ann?

Jodi-Ann Burey: Yeah, I mean, at that point, the symptoms were, it was an elbow thing. And so my first kind of diagnosis before I saw you were: tendinitis, something with the ulnar nerve...like very localized to the elbow. I think by the time I got to you, then it was spreading down to the hands and other parts of that side of my body. But I don't think it was up at the neck at that point. And at that point, I definitely didn't have anything funny happening in my legs—at all.

Dr. Virtaj Singh: Yes, so my initial hope was, “Okay, this-I don't think it's coming from her elbow, I think it's coming from up higher.” [Jodi-Ann: Mmhmm.] Maybe if we can open things up much higher, sort of within the muscles around your neck, it'll take the pressure off the nerves, and then you'll feel better, and that would be the end of it. That was sort of what my hope was - you know, best case scenario thing. And that's part of the reason I sent you to our nurse practitioner and do that needling treatment, [Jodi-Ann: Mmhmm.] to see if that can sort of open up the muscles and give more room for the nerves to sort of breathe in the area called the Thoracic Outlet. So that-that was the initial thought process.

Jodi-Ann Burey: Yeah. So, aside from me medically, because I don't-I would like to think I'm not a typical patient, *chuckles* do you remember your first impressions of me, as Jodi-Ann?

Dr. Virtaj Singh: I do! I remember, one of the first things that, you know, I remember is that you were very keenly intelligent. I just remember thinking Wow, this is a person, she knows healthcare, she's got a background in health, she's very smart, she's very in tune to what's going on, and she's sort of on top of it. I recall looking back, after we ordered the MRI, and you were calling my office to say, “Hey, I'd like to know the results, I want to know what's going on.” You were very invested in this, and you were very sort of on top of things. You were sort of your own best advocate, so to speak. But I recall thinking you were incredibly intelligent. I remember some of the early conversations where you opened me up to certain, you know, racial things—I forget, I don't remember the exact term, it was something about racial surprise? [Jodi-Ann: Oh, Black surprise.] Black surprise, Black surprise. I still to this day remember, sort of, that concept you embedded in me, which is like, I bet you I was-I remember wondering whether I had done that after you'd pointed out that clinicians tend to do that when they see you.

Jodi-Ann Burey: Yeah, and so Black surprise being...particularly because I don't have a racially identifying name, that when you walk into the room, you are subconsciously or consciously expecting a white person. And so typically when clinicians see me, or any type of scenario where you know someone's name before you meet them, they're like “Oh, so you’re Jodi-Ann.” And it's like, “Yes, Jodi-Ann is in room one. This is exam room one. Yes, I am Jodi-Ann.” And so what happens is that like, “Oh!” is Holy shit, you're a Black person.

Dr. Virtaj Singh: Yeah, so [Jodi-Ann: I don’t-yeah.] I'm sorry. Please go on Jodi-Ann.

Jodi-Ann Burey: I don't know, I can't say for sure like, yes, you did that to me or no you didn't do that to me. It's just something that is a staple experience for me going in and out of doctors’ offices. To be honest, like, as I'm reflecting on this, I was less guarded, even before I met you, because I knew you're also a Person of Color. And I had not seen any other person of color before seeing you. Every other doctor that I’d ever met was a white dude, and I did not have any good experiences with any of them. *chuckles*

Dr. Virtaj Singh: I can tell you, hearing you say that, in some ways makes me sad. I-you know, obviously, in hindsight, I wish I'd gotten that MRI earlier. And I feel bad because you sort of came to me with all these hopes, like, here's a Person of Color, here's this Dr. House, he's going to figure everything out. And obviously, you know, for that first run in our clinic, things didn't go as well as I would have loved. You know, so I sort of feel like a lot of faith you invested in me didn't come through the way I would have liked to, at least as quickly as I would have liked it to have happened.

Jodi-Ann Burey: I can, I can see that. I think we eventually got there, even after I had dropped off, why I came back versus going somewhere else. But before we go down that path, I do want to kind of go back, because I like to give people a hard time [Dr. Singh: *laughs*]. My therapist said that I test people a lot. But that's like a whole other thing that I'm trying to work through. But *laughs* at the time that we met, I was still going back and forth to Malawi a lot. And the first time I mentioned Malawi to you, you said “Oh, is that in Hawaii?” And I'm like “Dr. Singh, just because it sounds similar, doesn't mean it's the same place.” *both laugh* And then we laughed about it, but you actually sat down and opened up your computer to see where it was, which I was very impressed by especially given that, you know, a lot of people experience doctors just kind of coming in and out and not really taking extra time. But you took extra time and Googled where Malawi was, which I thought was cool. A big part of how I think I showed up with you and how I try to show up in general is I talk a lot about race and racism. I talk about it all the time, in all situations, as much as I can. I wonder if you recall that being different for you—those conversations that we were having with each other about racism, particularly racism in the healthcare system, and how racism was showing up in my own life?

Dr. Virtaj Singh: Oh, absolutely. I remember the uniqueness of that. I remember being very pleased that you were comfortable with it. And I don't know if you recall, it was either the first or the second visit. You came to the clinic, I had students with me?

Jodi-Ann Burey: Oh, yeah, I remember that.

Dr. Virtaj Singh: And I asked you if you felt comfortable sharing that experience with them. Because I think we don't get enough of that. I think everybody, as much as we can have lessons on this, we don't have people willing or comfortable about talking about race and their personal experience is. So I think a lot of people are ignorant of it. And I was really pleased that you at least with me, were, you know, more than happy to share experiences and talk about because—I can tell you, I don't know how much you want to fast forward, you opened my eyes up to things I didn't even think about, which now more people are aware of because of what's happening in our current culture. But at the time, you opened me up to things I was very unaware of starting with that first visit where you mentioned the ‘Black surprise’ [Jodi-Ann: Mmhmm.], you know, that sort of thing. So I was—it's almost like a gift you gave to me to sort of open my eyes to these things. Not to flip the interview suit on you, but did you feel uncomfortable when I asked you to talk to the students about it, too?

Jodi-Ann Burey: I wouldn't say uncomfortable. But I do think there's a level of frustration. So for me personally, Jodi-Ann, I will talk about it until my face turns blue. Particularly when it's related to healthcare, and me, like with my public health background, knowing what bias does and how it can impact someone's life and their health outcomes, right? Just not even being able to talk about race and racism and bias and all of that. But it was this moment of: I came to the doctor's office to get help, and then I'm being put in a situation to help other people. I don't think as a Black person, as a Black woman, especially, there are a lot of spaces, I think, in our lives where we just get to be helped … You know? And so as I'm trying to get healthcare, I'm trying to explain racism in the healthcare system, which to me, gets compounded in the frustration of these are students and they don't know what's going on. And I felt resistance to what I was sharing, and having to actively ignore that resistance, because I was just going to speak my truth and just lay it out. And I remember, I think it was laying down and I was just like du-du-du-duh, and this and that, and I just would not stop talking like, I don't even give space for them to debate me. *laughs* But I mean, I'm curious like you [Dr. Singh: *starts speaking*]—Oh, go ahead.

Dr. Virtaj Singh: No, please, please. Sorry.

Jodi-Ann Burey: Well, you shared with me, ‘cause I asked you what their feedback was. And I think you're the one who shared that they were like—I think one of them was like, “Well, I help—,” You know, she didn't say it this way, I'm gonna characterize this. But she's like, “I help poor Black and Brown kids in my clinic, so I'm not racist.” *laughs*

Dr. Virtaj Singh: Yeah, that's-that's exactly my recollection, my recollection. My thing is, everybody always thinks racism belongs to somebody else. Right? [Jodi-Ann: Yeah.] It's not—it's not their thing. That's somebody else. “I'm not racist, other people are racist.” And I don't, I wouldn't want to characterize these students as racist or actively racist, but having unconscious racial biases that they're not even aware of. 

And first off, let me apologize, I shouldn't have taken up your space. I just thought you were such a, you know, it was such a treasure to have you there, somebody who's willing to speak about their experience. And I have these students who probably don't ever get to hear from somebody with those experiences. But you're absolutely right, that was your space and your time. And it's not your job to have to educate these people. 

But they effectively said to me, “Oh, you know, that's not me, because I am working in community underserved clinics, and therefore, I'm sort of immune to this.” To their credit, I give them all the credit in the world for working in those clinics. Absolutely. But I think we all need to be open to the idea that we have these unconscious biases, because we do.

Jodi-Ann Burey: And so I'm curious, like, do you think that it is, or at least should be the expectation for physicians, you know, people working in healthcare, to understand how race and racism impacts their patients’ lives and their health care?

Dr. Virtaj Singh: Absolutely, I, I don't think we—any of us should have blind spots. And these are huge blind spots. You know, we all like to think we treat everybody the same, right? “I treat everybody the same, everybody is the same.” But we probably don't, we have all sorts of biases, we have, you know, moments of Black surprise, we don't know about and we walk into a room and we make somebody immediately uncomfortable. All sorts of things. And you've helped sort of open me up to this idea that, you know, I may be a Person of Color, but that doesn't mean I'm immune to this. [Jodi-Ann: Mmhmm.] And to sort of question my own biases, in this case, and in others, you know, do I treat people differently? Is there a role for treating people sometimes differently, in the sense that you try to understand their culture, and how their expectations are, but don't just assume they're like every other member of their culture? [Jodi-Ann: Yeah.] So yeah, no, I mean, you’ve opened me up to things. I absolutely think all physicians should get a better education and understanding of this. I don't know how best to do that. 

Jodi-Ann Burey: Do you, I mean, like asking you personally here like, upon reflection, do you feel like there are any racial biases or blind spots that you had that specifically impacted my care?

Dr. Virtaj Singh: Yeah, I have no doubt that I have racial biases and blind spots. To the extent that it affected your care where that comes up, in my mind, ultimately, is, would I have ordered the MRI of your neck sooner had you been a white person, let’s say. [Jodi-Ann: Yeah.] And I don't land there. And I've really studied your chart, and I think in hindsight, I wish I had, but it was just this idea that you weren't having any neck pain. I can tell you now, Jodi-Ann, every patient that even has vague symptoms down their arms, I always try to get an MRI of the neck now. [Jodi-Ann: *laughs* Yeah.] I—the thing I would say, and I don't know, I'm just thinking out loud right now—I wonder if I would have at least been more likely to offer you the option. That's where, you know, I really -- I feel like early on I should have been like, “Listen, this is the reason I'm not getting an MRI of your neck, but if you'd like me to, if you're thinking ‘Hey, you know, something may be coming from up higher, I'm really concerned about something in my neck itself,’ ’’ I would have been possibly done—maybe it should have been more of a collaborative conversation.

The other thing that throws me off is I did order an MRI of your elbow, I think, at that first visit. [Jodi-Ann: Yeah.] So it's not like I was opposed to ordering MRIs on you. It’s not like I was like, “No, I don’t want to order any tests.” I ordered an MRI right that first visit. I think I just got too honed in on this concept that it was coming from your elbow, that you weren't having any neck pain, [Jodi-Ann: Yeah.] but I am still certainly open to the idea that as a construct of race and unconscious bias, I treated you differently. I just quite haven't landed on the idea that well, that means I would have gotten the MRI of the neck sooner.

Jodi-Ann Burey: So speaking of me being like, actively in my care, when I specifically asked to see all your notes from our entire visit, and we sat there at the computer that day with all the notes, and it was really tough. And it's still something that I think about sometimes, of the exact MRI that would have found the tumor, you wrote about it on your first visit? And what could have been different for me now? Because I didn't have symptoms in my legs. I didn't have numbness in all the places where I have numbness now. 

And could my physical abilities right now be different if we were even able to talk about that MRI of the neck and honestly, that MRI that you did order of my elbow was the first time I ever had an MRI, ever! And it cost me like $400 And I was just like god damn, you know? *chuckles* And so I don't know if things would have been different because I still have agency right? Like I, you have asked me about tests before, and I've said no to them. So I don't know, I don't, I don't know how helpful it is as an exercise for me mentally and emotionally to think about the counterfactual, like, what could have happened if, but I don't know, I think it does fit into this narrative of Do we believe Black women's pain, or take it seriously enough? Or understand that even if someone is presenting benign symptoms, like it could be something more serious? I don't know. I don't know.

Dr. Virtaj Singh: Yeah, it's a very fair question. And, you know, I've had several thoughts about this, I don't know the rate at which your tumor grew... My assumption is, it was a very slow growing tumor. And my assumption is, had we gotten an MRI at that time, it would have showed it. That, there is a counter thought that I've had is, Well, gee, if I'd have ordered an MRI, then is there a chance that would have been completely normal? You know, because the tumor hadn't quite made itself apparent. [Jodi-Ann: Mhmm.] And then when you came to me one year later, would I've been less likely to get the MRI? Because I just said, Oh, well, we'd already gotten an MRI and it didn't show anything. [Jodi-Ann: That is true! I never thought about that.]

That, that's one thought process. I think no matter what, I, you know, that ... that's just a thought process. So it's, it's hard to know what can and should have happened. It also, you know, another thing is, if we'd have had like a more in-depth conversation, you didn't want to get an MRI of your neck at that visit. Let's say we said, No, let's get it from the elbow, you're having more elbow pain... Is there a chance that we would have then in our minds not gotten the MRI later? Because we said, Oh, we've already had this conversation. She doesn't want the MRI for neck. There's, there's just so many sort of, what-ifs? [Jodi-Ann: Yeah.] I'm...so happy we found it when we did and how you took charge of the situation. I've always been quite pleased with that. I don't, I don't know that we can know what the outcome would have been different. [Jodi-Ann: Yeah.] in any case, but all things considered, I'm I’m glad things sort of turned out the way that they did, [Jodi-Ann: Yeah.] in the end.

Jodi-Ann Burey: You know, it's interesting, even with someone had a high, higher than normal I think, level of medical literacy … It wasn't until our process that I learned that MRIs are very, very specific. Like you see MRIs on TV, you see someone's whole body going through this thing and so I always thought it was a full-body scan. I'm going to get an MRI, and they're going to know everything that's going on in my body. Little did I know is like, No, it's a very specific spot in your body, that you can keep getting more and more MRIs of just, different locations. It is not a full body scan. *chuckles*

Dr. Virtaj Singh: Oh, you're absolutely correct. And I, I wish the MRI community could do a different job. I've, I’ve sort of said, Well, why can't you just MRI a region at one time, for instance, I have a lot of patients who have this intersection of neck and shoulder pain. [Jodi-Ann: Mhm.] And I wish you know, even if it's you know, two completely separate areas, they're, they’re adjacent areas. Why couldn't we just MRI in one fell swoop both of those areas? But apparently it's more complicated. You have to have certain coils and certain protocols. So it really is quite ridiculous. You know, I got an MRI of somebody's shoulder thinking it would capture the one of the joints in the clavicle - the sternoclavicular joint - which is part of the shoulder complex and they’re like “No, you have to get a completely separate MRI for that.” So we're talking about two different MRIs, even of the same joint. So [Jodi-Ann: Wow.] it's it's complicated and yeah, you're absolutely right. I, I take for granted what patients do and do not understand. I, you know, I, I sort of assume, Oh, everybody knows, you know, you get an MRI the elbow, it's only at the elbow. But you know, people don't know that. And you're absolutely right. I could see your whole body's going through the scanner, you're in there for 45 minutes, why would they not be able to get pictures of other areas?

Jodi-Ann Burey: Oh, yeah. And that's why like, I always encourage people like, “You need to Google body parts.” ‘Cause I think at one point—either with you or someone else, maybe at Sloan—and I was just like, “I need a scan of my brachial plexus!” *laughs*

Dr. Virtaj Singh: Oh, that's it. That's a, that’s a very good point that, you know, even if you had an MRI of your neck, it's not captured in that brachial plexus area where a lot of bad stuff can happen.

Jodi-Ann Burey And so I want to go to this referral to the nurse practitioner … You knew me, you know I got, you know, I'm very involved, *chuckles* and talk a lot about race and racism. And you referred me to this guy for this needling, which became the reason, Dr. Singh, that not only did I not come back to your office, I did not go to another doctor for a year. And so I'm curious from your perspective, like, I don't know, the physician’s perspective, obviously, but did you notice that I never came back? Or why I didn’t come back?

Dr. Virtaj Singh: No. I mean, I was completely blindsided when you came a year later, to be like, Oh, I haven't seen you in a while. Part of, I mean, I have no doubt that at times, I was like, Oh, I wonder how she's doing, I wonder where she went. But a couple things there. I've patients sort of, drop off all the time. And sometimes it's ‘cause they got completely better … Sometimes it's because they, you know, in your case, maybe got frustrated and didn’t want to come back, you know, that sort of thing. I never sort of try to chase them down. I sort of like, accept that, okay, people are going to come in and out of my life. You know, some people are going to stick with me and think I'm the right fit. And I'm going to sort of walk them through a journey. Sometimes my hope is that people got better, you know. And when I referred people onto Joe. Sometimes it's actually a success. And I never see them again, not because Joe turned them off. But because they got-they started doing that needling, it worked, they kept seeing Joe and then they didn't have to come back to see me. And I guess I'm a little bit of the eternal optimist, I probably assumed, Oh, she must be doing well, great. She's getting better with the needling. She's getting better with this. If things regress, she's gonna come back and see me...type of thing. But I still to this day, I'm incredibly sorry that your interaction with Joe was so uncomfortable and it made you, you know, was so bad that you didn't seek any health care for over a year that makes me feel awful.

Jodi-Ann Burey Yeah, I mean, that it was, it was very traumatizing for me if I'm gonna be honest—Because I mean, at that point, I had been in and out of doctors offices for two and a half years, almost approaching three years, and I was exhausted of that process and exhausted of feeling like people weren't paying attention to me and experiencing a lot of racial microaggressions during that process. Like I even had a, a physician that I had a really negative interaction with where I called the insurance company about him. Like, that's kind of where I was. And, you know, the comment that he made when he was doing needling and saying that my, my skin was really tough or something like that, was so inappropriate for me to have one, a male healthcare provider, making a comment about my body that I felt was not...relevant to my care. And it just immediately hit this vision in my head as I was getting this needling of, you know, enslaved African women, having their back exposed, getting whipped and stuff. Like, that was the first image that went through my head. And when I've shared this story with other Black women, before I even say what I thought of, they also thought of that. And so that level of, kind of, historical trauma and communal trauma was really tough for me, and I just, I never came back. And I totally get like, you can't keep track of, of patients like, there are doctors that I saw, and I never saw again, I'm not expecting them to have their, you know, MAs call and see what happens. You know, my mom, she puts it this way: He who has the raw meat seeks the flame. And so my pain is the raw meat and you're the flame and so it's my responsibility in some sense to go and seek the flame. And so it's not really on the flame to be looking for the raw meat in that way.

Dr. Virtaj Singh: Can I tell you a couple things? This situation actually helped guide me in another situation...If you want to hear about it? [Jodi-Ann: Yeah, I do.] So I had another African-American patient who I sent to another doctor, not to get too convoluted, but I needed this person to see this other doctor for a consultation. [Jodi-Ann: Mhm.] And the doctor said something and it's, it's similar to something I've said to a lot of patients, which is some, to try to say that “A surgeon is not gonna want to do surgery on you.” [Jodi-Ann: Mmm.] And sometimes we word it like, “A surgeon is not gonna want to touch you,” or sorry, I should say, like touch this case, but the way we sometimes say it is, “A surgeon is not going to want to touch you.” [Jodi-Ann: Mmm.] I sent this patient to this other doctor, and he made that statement to the patient. So, but he said the way the patient heard it, and he got, it got back to me was “A patient's not going to want to touch your skin.” 

So [Jodi-Ann: Oof!] this African-American patient of mine took home the message that no surgeon is going to want to touch his skin. [Jodi-Ann: Yeah.] And normally, I would have been, said, tried to, you know, defend the doctor said, Oh, that's not what they meant, blah, blah, blah, blah, blah, and just left it at that. But because of our experience, the experience you had with Joe, I made it a point to call that doctor and say, “Hey, listen, this is how your words were perceived...I have no doubt that's not what you meant to say.

But these are the sorts of messages they are hearing, this community's hearing.” And if we're not more careful about it, they then stop seeking medical care, because African Americans are less likely to seek health care. And then if we reinforce it with these sort of messages, because we're not thinking when we say these things—these things that we believe are benign statements—they're sending the wrong message. So that's how I took your situation and try to take it forward, which is okay, well, I'm remembering I had a very similar situation with Jodi-Ann. And then she didn't come back for a year because of that situation, I can't make that situation better now. Maybe I can make it less likely to happen. So, it is-when he came back to me with this wording rather than sort of brushing it aside and not doing anything, but I tried to take it super serious. And I tried to then call the other doctor and let him know, and I think it helped. But it's something I've never-I'd never thought about ‘til your situation, which is how the message we're sending to people about how you're not welcome here. [Jodi-Ann: Yeah.]You're not welcome in health care. Your skin is wrong, and we don't want to treat you. Nobody wants to touch your skin, your skin is thick. We can't even get our needles into that. That's the message I hear [Jodi-Ann: Yeah.] that you guys are hearing. And I don't like that. 

And so another thing I've tried to do, you know, I can't make what happened to you better. We now have a female nurse practitioner, in case that would have helped—don't know that it would have. I've tried to hire more People of Color. And I don't know, you should come by our office sometime.I think we've done a little bit better job with that. It's not great. [Jodi-Ann: Yeah.] But you know, try to make the environment a little bit more welcoming to people. Because I can only imagine if you come into a clinic, you know, everybody at the front desk is white. All the people in the room are white. And then you have an older gentleman with a southern accent, telling you how thick your skin is or whatever. He said, Yeah, how unwelcoming that environment is and I do not want to work in a clinic that is perceived as unwelcoming to people. I want everybody to feel comfortable and welcome in my clinic and that you felt uncomfortable, and unwelcome makes me very sad. And that it negatively impacted your health makes me even sadder.

Jodi-Ann Burey: I think this is kind of back to our earlier points of, you know, physicians are actively aware and engaged with race and racism and in ways that they are enacting these racial microaggressions against their patients, maybe in ways that they're not aware of. It's not that it just makes someone upset, or you know, someone took something the wrong way—they will base their future decisions on that. Right? And like, in my case, not showing up to a doctor for a year. And so, I don't know if you know this, of how I got back to you.

Um, well, before I get into that, I totally hear you around changing the demographic composition of folks at your clinic because it was such a relief to me when I got treated at Memorial Sloan Kettering. To see reflected in the folks around me that felt very much like part of my community or people that I trusted a little bit more or didn't feel as guarded when I was engaging with them, to the point where like, when you talk about, “Oh, they felt like family.” I had family members that I didn't even know worked at the hospital where I was treated, and to just be able to have my family around and just feeling close to the people around us; that just made the whole experience so comfortable because you're already uncomfortable being in a doctor's office or being hospitalized. And so I think, you know, regardless of where you are in the country, just having folks that represent the people in the community is so important to your health care and your health outcomes. Um, but here's how I got back to, you know, I was like, Fuck this, I'm not going to a doctor Singh’s clinic anymore, I'm not going to any clinic anymore. I'm just going to kind of live my life and see what happens. During that time, my symptoms are actually getting worse to the point where I couldn't open up plastic things. I remember needing to use two fingers to open up an umbrella. I couldn't pump like the hand sanitizer in my office, or there were all these small things that I couldn't do. But I was still very dedicated—as I still am dedicated—to not dying alone. So I like the climbing gym two to three times a week, thinking that I would just be climbing and then some guy would come up to me, and then we could get married and have babies and be happy. 

Anyway. So I'm very regularly climbing, even though I can't grip things really well, but I was still trying to do what I could. And that's another thing that I noticed, too, that even though I was climbing agai—like, two, three times a week for months—I wasn't getting better at climbing. Like, I wasn't able to advance in my skills on that. So anyway, I'm sitting there on the mat in between some climbs and Aaron walks by. And it had been so long since I'd been to occupational therapy that I remember seeing him pass. And I was like, What's his name? And I'm really good with names. I was like, what the hell was his name? And then I just shouted “Aaron.” It just came to me. And he turned around, he's like, “Oh, hey, Jodi-Ann!” da-da-da, you know, reacquainting. And then he goes, “Wait, don't you have hand weakness? “And I said, “Oh, yeah, I definitely still have hand weakness. I think it's getting worse.” And I'm just kind of joking about it. And he's like, “Then what are you climbing for?” And I’m like, “I'm here for the boys,” right? *both chuckle* 

Anyway, he's like, “Well, let me see your hands.” And mind you, he's just at the gym too. Right? So he looks at my hands. And what I didn't know he was looking at which I know now is that my hands-the muscles in my hands are atrophying. And so he looked at it. And he said to me, “You should go see Dr. Singh.” And that is how I ended up back in your office.

Dr. Virtaj Singh: And we're talking about Aaron the OT from MoveMend?

Jodi-Ann Burey: Yeah. Aaron Shaw.

Dr. Virtaj Singh: Why did I think it was the massage therapist? I always had in my mind that it was the massage therapist you'd talk to.

Jodi-Ann Burey: Because I was also going to Mike Hamm [Dr. Singh: Yes.] By the time I went to Mike Hamm—which he is not cheap, right? So by the time I went to him, I had already had that appointment scheduled with you. And so when I went to see him. And it's because I was at work, and I was in so much pain, I was at in the office, and I called his office and I said, “Can I see him today?” I was hurting so much. So I go to him that day. And he also again, does what Aaron did, which is look at my hands. And he said, “You should go see Dr. Singh.” And I said I have an appointment with him in a month. And he's like, “You should try to get in earlier.” And I'm like, you know, there are things that he can't tell me, you know, because they don't want to be diagnosing things, right? Everyone has their lane, which is very frustrating on a patient side of it, to know that someone is seeing something, but they can't tell you what's happening. And so it already takes me forever to get an appointment with you. So, I didn't understand why we’d need to move it up. And so I said to him, “Whatever you're seeing that you can't tell me, I need you to write it down in whatever medical jargon that you have, so I can give it to Dr. Singh.” Because another challenge when the patient is the point person to try to navigate a healthcare team—then you depend on my translation or interpretation of what someone is saying, to understand what's happening with me. And by the time I re-say it, it might be downplaying or be filtering kind of the level of urgency or severity of the case. And so at that point, I was like, “I need you to speak to Dr. Singh in the way that you can. I cannot translate it because I could be messing it up.”

 And that so that I think that's when you are getting communication from Mike Hamm, but it was Aaron that recommended I even schedule it. I wasn't even thinking about coming back to you until Aaron said it. And then I didn't understand that this could be serious until Mike told me that I needed to see you sooner. 

Dr. Virtaj Singh: Number one, I'm really happy they did that. My recollection is that Mike sent me an email, [Jodi-Ann: Yep.] where he had raised some concerns. Was I able to get you in sooner? I hope I was.

Jodi-Ann Burey: No, I was like, I don't know what Mike is talking about. I'll just go at my regular appointment. Like I told him to message you. And then I had a printout or something of whatever that was, because I asked him to copy me or also to email me whatever he emailed you. But I mean, it was like, “L1…” da-da-da [Dr. Singh: laughs] And I was like, I don't know any of this stuff. I’ll talk to Dr. Singh about it. *laughs*

Dr. Virtaj Singh: Yeah. The thing that was concerning when you came back to see me is that you'd also develop symptoms in your other hand. [Jodi-Ann: Yeah.] And that you’d developed some atrophy, some wasting away of the muscle in your hands. So usually, you know, we were concerned about Cubital Tunnel Syndrome. We were concerned about the Thoracic Outlet Syndrome. Usually, when people have atrophy in their hands, it's coming from somewhere along the peripheral nerve. So I did an EMG on you. And it really didn't show much that would suggest a peripheral nerve. But what it showed is in a bunch of different muscle groups, you had difficulty recruiting the muscle. [Jodi-Ann: Yeah.] And we call that pattern “Central”, In other words, it seems like it's coming from within the central nervous system, which is your brain and spinal cord. Yeah. So after that, first is I'm like, okay, she has symptoms now on both hands. The EMG is not showing me anything in the peripheral nerve. I'm concerned, something may be going on in the central nervous system. That could have been anything from, you know, a tumor in the brain, something in the spinal cord, a herniated disc pinching on the spinal cord. ALS crosses your mind when people have this sort of presentation, there was a lot of stuff. So that's when we said, “Hey, we need to get an MRI of your neck. Stat.” 

Jodi-Ann Burey: Yeah. Were you surprised to get the email from Mike?

Dr. Virtaj Singh: Was I surprised? No, that the thing I've always tried to be, [Jodi-Ann: Mhmm.] is available to the people I work with, right? [Jodi-Ann: Yeah.] Like, everybody has my—not everybody, but you know, people have my phone, cell phone, people have my email. So I get emails pretty frequently about patients. Like, “Hey, can you get this person in sooner? I'm a little concerned.” I mean, I get probably three or four of these types of emails per day. [Jodi-Ann: Yeah.] Where somebody's saying, “Hey, I'm following up with this person. I'm concerned about this. Could you look into this?” Because I'm a big believer of a collaborative team, right. [Jodi-Ann: Yeah.] So you know, I'm not going to pick up on everything. And these skilled therapists around the community have insights. And I don't have the necessary God complex of a doctor where I'm like, I know everything. I don't need input from a massage therapist. I welcome the input, so that a community provider contacted me to raise some concerns was not unusual for my practice. 

Jodi-Ann Burey: Yeah. But I will say, I think it is unusual in general, because when I left Sloane to go to Presbyterian, where I did the inpatient rehabilitation, Dr. Choudry, there was just like—and Dr. Douglas—they were like, “Okay, so I just want to let you know, I talked to Dr. Singh today, and this is not normal, like we don't—” *giggles* Like, they were excited about it, but wanted to impress upon me that you were very active in my healthcare and what was happening in ways that they did not experience with other doctors before.

Dr. Virtaj Singh: I tried to do that, because part of the problem navigating the health system is people don't know how to do it. And there's all these sort of like, lack of communication between the pieces. And like, here, you are having to travel across the country to get this high level inpatient. And then all of a sudden, you're going to come back to Seattle, nobody's going to know where to, you know, how to pick up the ball from there and where to go with it. Right. [Jodi-Ann: Yeah.] And spinal cord injury is not 1,000% my wheelhouse, but I know enough of it to try at least help direct you in different ways. And no, I try to do that as best I can, I fall short. Obviously, I can't do that with every patient. But to the extent that I can help people navigate a complicated healthcare system, when they need the help, I try to do it.

Jodi-Ann Burey: Okay, so to the tumor. And thank you for your care. *chuckles* So, you knew about the tumor before I did. What was it like for you, when you got a call from the radiologist? Like, how did that make you feel?

Dr. Virtaj Singh: Oh, I was super sad. I mean, I remember having a whole bunch of emotions. I remember thinking this is already somebody who has expressed frustration with the healthcare system, not that I want this to happen to anybody. But this is one of the last people I want this to happen to. I knew you have this sort of active lifestyle. I knew this was a very unknown thing. You know, you and I went through a journey of learning about spinal tumors together. [Jodi-Ann: Yeah.] I still think you know more than I do. So there was all this unknown surrounding this, what's going to happen? You know, that sort of thing. It was awful. The best analogy I can give you is how I felt when I figured out somebody had ALS. Just that sort of like, here's a young, healthy person. This sucks. I'm not looking forward to telling this -- this person about this. At least with a—Well, ALS, you know is going to be awful and the outcomes are gonna be bad. For you, I didn't know. [Jodi-Ann: Yeah.] 

I didn't know how this was going to play out. Were you going to end up a person with a spinal cord injury, wheelchair bound the rest of your life? All these sort of unknowns. And so at that initial moment, I'm just like, this really sucks. I'm not looking forward to this. My first thing was I got my clinical assistants who are pre-medical students. And I said, “Okay, this is a learning opportunity for you people, we need to first off, notify her.” Now, the biggest question I had early on, and I actually collaborated with a couple people to see what they would want in this case. I didn't know whether I should try to deliver this news to you over the phone, or deliver this news to you in-person, have you come in, was it going to create unnecessary anxiety for you to come into the office? [Jodi-Ann: Yeah.] I remember a similar case, where I had a young person who I had ordered an MRI of her neck, and we found out that she had multiple sclerosis. And I delivered that news by phone. [Jodi-Ann: Mmhmm.] And so that was sort of guiding my experience, Gee, would it be better to just call her and tell her? Or should I bring her in? Because this was such a visual thing? I sort of erred on the side of bringing you in. I would love to know, in hindsight, if you'd rather me just told you by phone. I don't know the correct answer. I believe what I did is I told my clinical assistant to call you, have you come in, and then, you know, we talked in person.

Jodi-Ann Burey: So, my side of it was I left the MRI, I went on a lunch, like I took lunch off and went to do the MRI, I came back home. I'm like, “doo,doo-doo, doo, doo” I’m on my calls, like doing my work. Because how many times have I gotten an MRI at this point, or some type of test. And so, I'm thinking—And we have talked about it. Like, I'm going to order an MRI, I'm pretty sure it's going to be clear. Let's just rule some things out. And so I didn't really think that much of it. And then, by the time I got home, and this MRI place is only a mile away from me. By the time I got home and started working, I was getting calls from your office. And I'm like, What the heck are they calling me for? I don't think that's a good sign. But I'm actually, I'm on a work call, so I couldn't take the call. And so I'm trying to wrap up the work call, knowing that your office is trying to reach me, and Daniel emails me. He's like, “Hey, you know, can you come see Dr. Singh today at 3:30, this is March 1, 2018...”  He asked me to come in at 3:30. And I said, “Okay.” 

And I messaged my supervisor, and I was like—And who, my whole office knew that I was in physical pain for three years, right. So this was not abnormal for them. And my boss knew that I went for the MRI. And so, I was just like, “Yeah, my doctor wants me to come in,  I—it takes me a while to even get an appointment with him. The fact that he wants to see me today, I don't think that this is going to be good news.” And so she’s like, “Take the rest of the day off.” Like, “Do what you have to do.” So, I go into your office. Which your office is a five minute drive away from my apartment. *chuckles* And, I mean, I just had to lean on my personality and try to manage this. And I remember walking into—you walked into the room and I was like, “Alright, Dr. Singh, what's going on? You got me in your office, am I dying or what?” And the first thing you said, *chuckles* in your very typical way. You said, “Well, you're not dying, but you do have a tumor in your spine.” I was like, “Okay, doo,doo-doo, doo - doo,doo-doo, doo, doo.” You know, like, it's not landing. And then you throw up the screen. You know, to your point of it being very visual. And I see this mass. I'm seeing my brain. Like, I'm seeing the MRI scan of me, that I just took like two hours ago, with this massive thing in my spine. And I think seeing that it starts to sit, right? And then when you started talking about, you know, scheduling with Dr. Lazar to do a surgeon consultation … From what I recall, that's when it hit - Holy hell, surgery? Like he's already talked to surgeons about seeing me?  Like before I even walked into this room, you had a name of a surgeon and all this kind of stuff. And I do think in hindsight, that me coming in was really important. Particularly for me as someone who has a high need for information. Someone who is very actively engaged in my healthcare, I think that was probably the best choice, in my case, to actually be sitting with you and looking at it. And like having that time to, you know, answer all those questions. And also, to have this massive point of trauma happen somewhere else and not in my own apartment. Listen, I've had guys break up with me sitting on my couch and I still think about that when I sit on my couch. *Both chuckle* Just imagine if you break this news about this frickin’ tumor in my spine in my own apartment. I think that would really change my orientation to this space. But that's just like, I think everyone's different. But I think you made, definitely made the right call with me.

Dr. Virtaj Singh: You reminded me of something I forgot. Before I had you come in, I actually called a surgeon to discuss your case. [Jodi-Ann: Yeah.] Because I wanted to get a second set of eyes on it. But more importantly, I remember thinking, this is going to be incredibly traumatizing.The last thing on earth she needs to do is have to plan her next steps.  [Jodi-Ann: Yep.]  And I remember thinking, I at least want to have the next step ready for her. So that you didn't have to process and plan at the same time. I want— I remember thinking that was an important step. And that was another reason I wanted you to come in. [Jodi-Ann: Yeah.] Is so I could give you, “This as a referral, this is the phone number. They are ready to see you. Call this number. They're gonna be ready to schedule you immediately.” I just, I remember wanting that for you because I tried to as best I could put myself in your shoes and be like, What would I want?  [Jodi-Ann: Yeah.] And I would not want to have to also plan the next step.

Jodi-Ann Burey: Dr. Singh, I have to tell you, that was the greatest gift to me. It wasn't until that where I even realized how urgent it was. ‘Cause you're like, “Oh, you're gonna see him tomorrow at 8am.” And I'm like, 8am, like, do I have meetings or do I have this? And I was like, Oh, wait, whatever I previously had scheduled at 8am does not matter anymore. This is the most important thing that's happening in my life right now. And nothing else matters. And so, from that day, March 1st, I didn't go back to work for four months. Like and, so I took it very seriously. Like, I called my -- the president of my organization, I was like, “I can't come back. I have to figure this out.” Before I even saw  Dr. Lazar, I had already planned that I wasn't going to go back to work until I knew what the heck was going on.

Dr. Virtaj Singh: Yes, I pushed you in the right direction and gave you the next step, but man, you took that ball and you ran with it and you became your best advocate. And I've always been impressed by how you did it because 98 out of 100 patients are not going to do what you did. They're going to go with the first surgeon or maybe somebody in Seattle. But you went out and you said, “Okay, I'm going to research. I'm going to find the right people. I'm going to do this.” You found Dr. Bilsky on your own. I didn't even do that for you. You found the surgeon who was the right person to see for this on your own. You were maybe frozen for a little bit. [Jodi-Ann: Yeah.] But you weren't frozen for long. You took that ball and ran and to your own credit. That's what you did. So I've always been impressed by that.

Jodi-Ann Burey: Yeah, I appreciate that. ‘Cause, yeah, I mean, seeing Dr. Lazar would have been an easier thing to do. And in hindsight, he was the only one who was right about what type of tumor it was. *chuckles* But I saw him, I saw folks at Virginia Mason, and I felt like I was interviewing people. So I was like, went to Virginia Mason talked to someone there who spoke about my case to a whole panel of doctors and I was like, I need you to write down every single doctor's name who was in that meeting, so I know who the hell is recommending this crazy—They wanted to biopsy it first. And I was like, it's so interesting, because I learned enough about it, right? I had even been YouTubing videos of the surgery. By the time I got to Dr. Leveque and he was proposing to just do the biopsy, I was like, “Absolutely not!” And I went back to you, and then you called Dr. Lazar. And we were like, “Why would you-” like, and I'm so involved in the approach of the surgery. Like I'm not a frickin surgeon, right. *laughs* But [Dr. Singh: No it-] Yeah, go ahead.

Dr. Virtaj Singh: It's so sad that our system, I mean, I wish there was, like, this straight roadmap and everybody agrees, “This is the map. This is what you have to do.” But there was so much contention as to what the next step was. And it wasn't trivial. It was, “Hey, do we subject you to radiation before this? Do we put you through one surgery, just to biopsy, to decide what it is and then decide on the next surgery?” You know, cutting open the neck is not a benign thing. [Jodi-Ann: No.] And when you do it once the second time is that much worse. And to not have a clear path, but you navigated that so admirably where you said, this is this opinion, and then you just once you made your decision, you made a command decision, like, “I'm doing this, this is what I'm going to do. And this is the right choice.” And it absolutely made a difference in your outcome, in my opinion. That you didn't wait for me to tell you what to do. You didn't just go with what the first surgeon said, you were the captain of your ship. And I wish more patients would do that. Because you know, I shouldn't be the captain of your ship. I should be your first mate. [Jodi-Ann: Yeah.] You absolutely made all the right decisions. And like I said, it made a huge outcome improvement, in my opinion. As opposed to pre-radiating you or biopsing for one surgery and then coming back in and doing another surgery. I felt like you made all the right decisions.

Jodi-Ann Burey: Well again, thinking of you as my first mate, like you still hadn't-I still think you were actively choosing to show up for me in that process. Like, I can't-how many times did I come to your office at 5:30pm when you were done? Like, me and Joyee, my friend, to just sit and talk about things with you, or times that you called me. Like, in that first meeting, when you gave me the diagnosis I remember you said, “I will give you my phone number. I will be with you every step of this process.” In my mind. I'm like, I don’t need Dr. Singh’s phone number. [Dr. Singh: laughs] Like, it was just... I didn't realize what I was signing up for. But not only did you show up for me, but you were having weekly calls with my family. And so I'm just like, Why? Why do you think you were so present for me and my family during this process of finding the surgeon and then even after treatment?

Dr. Virtaj Singh: Well, a couple things. Number one, you let me in, which I was always very appreciative of because this is, as we've talked about, this is your journey to allow in who you want or not. And I was always appreciative that you let me be a part of this, number one. 

Number two, this is like a once in a career case, right? [Jodi-Ann: Yeah.] Ironically, I've had a second one. And they also went to Dr. Bilsky. [Jodi-Ann: Yeah. *laughs*] But this is usually a once in a career case, and I wasn't gonna just throw you out there in a difficult to navigate world, although I have no doubt you would have navigated these seas effectively without me. But I, you know, wanted to be there and be present. I wanted to be as available or unavailable as you wanted. And it was almost like, I got to experience the joy of finding out which type of tumor it was, and that it had been fully removed. I don't remember if it was your family, but somebody sent me the video of everybody, like, cheering in the recovery room. I remember all that. I remember getting all these little text message videos. So it was actually a gift to me to be allowed to be a part of this process with you. And so, you know, thank you for letting me be on this journey with you. And I was happy to help in any way I could, even though I'm not, you know, I'm not a spine surgeon. You probably know more about spinal tumors now than I do. You know, I thought I would at least be helpful to be able to speak physician to physician with people and sort of be a sounding board for you.

Jodi-Ann Burey: Yeah. Well I wonder if that was hard, right. So I looked back in our text message history, and the night before the surgery, I texted you just kind of out of the blue and I said, “Am I gonna die tomorrow?” And you said, “It is very, very unlikely.” *both laugh* Like, I mean, I know you and so I can take that. But I wonder like, what does it mean to get on your phone, pop up a message: Jodi-Ann says and is asking, “Am I going to die tomorrow?”

Dr. Virtaj Singh: Well, I mean, I think there's the human side and the clinician side, right? [Jodi-Ann: Yeah.] The human side wants to reassure you, you know, that's not going to happen, there's no way bla bla bla bla bla. The clinician side has to be, like, you know, I can't entirely rule out that possibility. It's incredibly unlikely. It's, you know, it's not going to happen, but I can't tell you 100% certainty that that's not going to happen. Would you like me to have called you, now that I think about it? I can't remember the time of day, I would have been more than happy to.

Jodi-Ann Burey: No, it was hella late. It was so late. *laughs* I'm surprised you texted me back and plus with the time difference too. So I think it was late for you, and it was it was, like, in the middle of the night for me. *chuckles*

Dr. Virtaj Singh: Yeah, I mean, I wouldn't want you to have felt dismissed by my comment. But at the same time, I don't know that, you know, you were receiving calls the night before your surgery at whatever time in the morning, whether it was a good idea for me to call you back.

Jodi-Ann Burey: No, I think- and I know you so, like, you're very matter of fact which I appreciate. I remember there was another time where I was like, “Am I going to be completely paralyzed?” and you paused for a moment, and you said, “It's possible, but not probable.” *both laugh* And that actually was a gift to me, Dr. Singh, because that's how I approached my whole situation. I was like, I have to prepare for things that are possible, you know, mentally, emotionally and logistically, like I had a will with all my health directives and had talked to my family about if I died, what I wanted to happen to my body and this and that and not. Like, I prepared for things that were possible. That was really important for my, like, mental orientation around this. *sighs*

Dr. Virtaj Singh: I remember that you held on to certain mantras, [Jodi-Ann: Yeah.] that people said, and if I remember correctly, your favorite was-and this isn't one that I offered, I forget who offered it to you- but the “stronger in, stronger out” mantra. [Jodi-Ann: Oh, yeah.] You said, “Listen, you're strong going into this surgery. And the stronger you are going into the surgery, the better your outcome is going to be.” And that really stuck with you, if I remember correctly?

Jodi-Ann Burey: That was huge. Because that became my t-shirt. Like, that became the kind of slogan for the whole experience of the tumor treatment. Like, “strong in, stronger out.” And I think that was from either you or Dr. Lazar. Because what was also happening at the time is I was going to Europe to go snowboarding. And I was still trying to live my life, in a way. And there was a sense, I think this was from Dr. Lazar, of like, “So this surgery can only bring you closer to where you are now. The best thing that you have going for you is that you're young, you're athletic, you're strong. You have a very strong body. And so the better your situation is now, you know, the better your outcomes can be. But if you go snowboarding, and like, fuck that up, I can't help you.” *both laugh* So I was also thinking like, how can I mentally be strong in this? 

Because, you know, I don't know if you knew this, but I was very seriously depressed, like suicidally depressed before I even had my diagnosis. And so my mental health and orientation around this was really important to protect as I was going through this process. I don't think you know this, Dr. Singh, but three weeks before you called me into your office to give me the diagnosis, I was on the phone with a suicide hotline. Like that's where I was mentally.

Dr. Virtaj Singh: I did not know that. Is there any chance that everything that happened to you is a strange blessing in disguise that sort of helped with the mental health? Or did it just make everything worse?

Jodi-Ann Burey: It saved me. For months, all I kept thinking about was like, I don't want to be alive. Like, I just don't want to be here. And just, like, life is trash. And it was just, like, a really tough time for me. And then going from this place of just wanting to kill myself to realizing, Oh, wait, is there something trying to kill me? And I was like, No, no, no, no, no! *laughs*

Like, if I'm gonna go out, I'm gonna go out on my own terms. And it flipped it of like, No, I'm actually going to try to save myself now. In a way, the cancer helped cure the depression. *laughs* It was almost like the universe was like, “Oh, so you want to die? Alright, bet. Let's see how serious you are about that.” And getting the diagnosis...I was not relieved. You know what I'm saying? I was like, hell no. Like, what can I do to save my life in terms of, like, am I gonna die, but also save the quality of my life in trying to figure out the best option. 

It's so weird. Like, I spent months not eating, I would eat like every other day, I lost 15 pounds. But the last time I weighed that much is when I was running marathons. I could not run a marathon, but I was still weighing the same, which is problematic. Besides climbing, like climbing was the only thing I was doing, which I don't even know how, mentally, I was doing that. But I just didn't want to do anything. I just kept saying, I just want to go to sleep and I never want to wake up. To then trying to figure out, like, wait, could I actually be quadriplegic, like a full, complete quadriplegic? I don't want to just sit around. Like, I was just, wait, what? You know, all this internalized ableism and stuff was coming up and not wanting that for my life. And so it was just like a complete reversal from, like, being on the suicide hotline and then literally three Thursdays later, I'm in your office and you're telling me about the tumor.

Dr. Virtaj Singh: It almost feels, and I don't want to get too woo-woo on you, that this was in a weird way meant to be in the sense that here you have this, you know, African American female who's got a Master's in Public Health who has this distrust of the medical system who’s been sort of jerked around who, you know, is suicidal. And all of a sudden, this is your story. It's such a great story, and I'm glad that you're telling it. And I think it needs to be told because I think...I almost feel like you were meant to be the most messenger of this story, right? Because you have the background to teach it, you have the education to be able to explain this to people with a Master's of Public Health, you have the experience as an African American female navigating the healthcare system, and you have the personal journey of somebody who, you know, didn't think life was worth living to now, reclaiming your life. I almost feel like this is a Hollywood story meant to be. Does that make sense?

Jodi-Ann Burey: It definitely does make sense. And it's also the thing that is...I knew at the time, but you just don't have the emotional capacity to be like, I'm suffering for this larger cause. You're just like, So, I don't want to be suffering right now. And it's taken me a while after I got discharged. And the two and a half years since, I've been in this really, really dark, awful place. Where for a big chunk of that time, like, the only people I was speaking to regularly was you and Aaron, like y'all were-it was weird, because like my doctors and my care team started becoming my friends because other parts of my support system had collapsed. 

I think it was just very hard for me to feel, like, you know, what am I going to do with this? ‘Cause I was still trying to come out of it. And it wasn't until COVID hit, where people were just complaining about all the disruptions and stuff in their life. I'm like, Oh, I'm sorry. [Dr. Singh: laughs] Did you randomly have your life turned around when you can't do the things that you want to do anymore? Huh! I know exactly what that feels like. And as people were kind of slumping at the top of COVID, I was thriving in it because I felt less alone. I felt less like a pariah because everyone's world was being turned upside down. And I had already been going through that for two years. And so, like, literally, this is just a couple months ago, where I have a more future-thinking... like, I don't feel at all the same.

Dr. Virtaj Singh: The reason I think your story is so important is you sort of have the roadmap for other people that are going to go through similar things that, you know, you sort of have been there, you can speak to their, sort of, experiences. Whether it be somebody with a rare spinal tumor, whether it be, you know, an African American trying to navigate the healthcare system, whether it be somebody who's, you know, super depressed, you’ve sort of been through this battle and can help other people. That's, I mean, at least what I hope for this story is that that's where things go.

Jodi-Ann Burey: Yeah. I mean, me too. And I think...I think there's an openness now more than there has been before to even hear that story. We think about Black and Brown people being disproportionately impacted or even dying from COVID-19. We have this whole racial reckoning with the movement for Black lives, and how people, you know, across professions, industry, demographic, are having, you know, potentially new questions about how racism shows up in their work. And to be honest, like, when Washington had the medical community rally for the movement for Black lives, and people were like, you know, “white coats for Black Lives”, like, it enraged me. Because I know what it feels like to have a Black life in a room with your white coat. And that doesn't always go well for us. 

It's really tough for me to wrap my head around, like, I know what health disparities look like. I know what racism looks like in healthcare. And I also know what it feels like when the healthcare system works for you. I mean, since my diagnosis, I mean, I have an incredible team across you and Aaron, and the folks at Sloan, like, I have and continue to trust you all with my life. And so I'm both holding, like, a huge distrust for the medical care system and a love and dedication to my team. And it just makes me even more sad, I think, to know that I know what it looks like when healthcare works for you. And I know what it feels like when it doesn't.

Dr. Virtaj Singh: Well, I think that's sort of the message, which is that, listen, it might be harder to navigate, but if you can sort of stay persistent, the healthcare system can work for you. But, you know, you need to be the one educating your providers about this, because they're not getting the education themselves. You know, and I'm not trying to shift the burden on to the African American community. I guess I'm trying to say the thing that's the saddest is when people don't even try to get health care because they already think the cards are stacked against them so they're not even gonna try and go to the doctor. Or in your case where you didn't want to come back to see me for a year. But, you know, maybe if there's a way to overcome that and say, Listen, if you are diligent, if you work with the system, it can and will eventually work for you. And to be less reluctant to seek the health care. That's what I would hope for. But you know… that's a tough situation.

Jodi-Ann Burey: It is tough because I'm like, I'm tired of overcoming. Like, can't you just look at me and say, “Yes, there's a Black woman in my office, and she says she's in pain. And I'm gonna do whatever I can to make sure she's okay.” And so I'm curious, like, how even in this current moment, movement hopefully, around, you know, Black Lives Matter, how that might have impacted you, and maybe connected some more dots for you, given our relationship and things that we've been talking about over the years.

Dr. Virtaj Singh: It definitely impacted me personally. And we've talked about, you know, the things I've changed, the perceptions I now have. [Jodi-Ann: Yeah.] And that I'm sort of more open and understanding of my own biases and how they could play out. So it's affected me. Then it goes into this, well, how do I get other people to sort of come to this? And it sucks, because you're right, that should not be your burden. You should not have to be the one to do this. But you are sort of, in the best position, not the best, but you're in a good position to sort of have a message because you have a very compelling story. You reminded me of something because I actually went to that white coat for Black Lives Matter rally. Did you go to that? I almost thought about inviting you. But then I decided that'd be weird.

Jodi-Ann Burey: If you invited me I would have gone, but I didn't go.

Dr. Virtaj Singh: You know, you want to know why I didn't invite you? It's because I didn't want you to think that I only think…I didn't want you to think, like, you're my token Black person, right? [Jodi-Ann: Mhmm.] Like, “Oh, I'm going to this rally, I need to let Jodi-Ann know, ‘cause she's Black.” [Jodi-Ann: Yeah.] “I need to show I've got Black cred because I got a Black patient.” [Jodi-Ann: laughs] I really didn't want to do that. So I'm like, you know, I didn't want you to think I only identify you as a Black woman. [Jodi-Ann: Mhmm.] And therefore, and I thought if I bothered you about this or just brought you into it, you would think, like, “the only time I text Jodi-Ann is when something Black is going on” [Jodi-Ann: Yeah.] So I purposely didn't, but I thought about it. 

Jodi-Ann Burey: I really appreciate that, like, that perspective. And that kind of checking yourself on that. I think I, yeah, I really appreciate that.

Dr. Virtaj Singh: So I went to this rally. [Jodi-Ann: Mhmm.] And there was one really compelling speaker, I think she was from Children's Hospital, there was some part of the rally that was, “Hey, let's turn a flashlight on ourselves.” This is, in my opinion, this was the healthcare rally, right? This is where we all look at ourselves and say, “What are our biases? And how does it play?” And there was one really good speaker, but I'm telling you, I went to that rally, 90% of it was about defunding the police. [Jodi-Ann: Yeah.] Which I understand that message, I understand why they tie it to healthcare. Because, you know, the idea is to employ more mental health resources, as opposed to having police do it. But my impression of the rally is we didn't shine enough of a spotlight on ourselves, and what we need to change, because I feel like that should have been the purpose of this rally. I get the larger movement. But I really wanted us to shine a flashlight on ourselves: What should we be doing differently as a profession? [Jodi-Ann: Yeah.] So that we don't have another experience like yours - where somebody doesn't feel welcome in the healthcare system, doesn't come back to my clinic for a year, and things just get worse and this situation. That's sort of my rallying call. Or, How do I make it so physicians think a little harder about the language they use, so that they don't make my patient think that a surgeon isn't gonna want to touch their skin? Like, you know, be a little bit more aware of how our words can be perceived.

Jodi-Ann Burey: I appreciate you so much.

Dr. Virtaj Singh: I appreciate you so much.

Jodi-Ann Burey: Is there anything else you want to share?

Dr. Virtaj Singh: The only thing is I—and we didn't talk about this—one of the moments you told me about, which opened my eyes up to something that now is all over my Facebook feed, was this idea, you know, the whole “Karen” idea. [Jodi-Ann: *chuckles*] You told me the story before everybody knew what a “Karen” was. Before all these-before the two gentlemen at Starbucks got arrested for being Black in a Starbucks bathroom. [Jodi-Ann: Oh yeah.] Before any of that happened. You told me the story, that after you found out your diagnosis, you were sitting in a hotel crying [Jodi-Ann: Yeah.] and somebody confronted you on it and called the police. That to me opened my eyes to like this, this thing that now people are a little bit more aware of it. You were sort of like my first vision into that world, where I would have never understood that part of your life; where people just sort of, for stupid reasons, call the police on you because you're crying - because you just found out you have a tumor in your neck...that's worth calling the police on? I mean, and, and so you get the, you know, you have the more highly publicized events where a company, you know, like Starbucks takes it seriously. But whatever happened to that hotel? Did you ever do anything? Was there any recourse? Or is that, you know, it wasn’t videotaped?

Jodi-Ann Burey: And that's the thing. Like, I mean, racism shows up everywhere, right? And so, like, again, I was doing the whole snowboarding thing. I went-I got the diagnosis on the first, I saw Dr. Lazar on the second, on the third, I did all these MRIs, and then a couple of hours after the MRI I got in my car and I went to Idaho *chuckles* to go snowboarding for the weekend. My birthday’s on the fourth. And so I have three days worth of information about what's happening, and I didn't know that much. And...I was just crying in a way that I've never cried before. Just by myself in my hotel room. And the woman at the front desk, we’ll call her Karen, *both laugh* called the friggin’ cops on me and they kicked me out of the hotel. Because I was “too noisy”. And she said that I was now trespassing and that I needed to leave or I'll be arrested. And so I just remember, you know, the flight or fight - like survival instincts kick in, right? And so I'm just like, in the middle friggin’ Idaho, the home of the Aryan nation, and these two cops with guns in my hotel room. I’m by myself. I don't want to end up like Sandra Bland. Like, and the thing with Sandra Bland hit me so hard because the things that she was saying, I would say. Like, Why the hell do I need to put out a cigarette in my own car? Like, You pulled me over for this? And like, I heard myself in Sandra Bland. And so I'm advocating for myself in front of these cops and the front desk manager. And I'm just like, Am I gonna die? Am I gonna die, today? And the fact that they looked at me with no compassion after I told him, I was like, “Yeah, I'm freaking crying because I have cancer. Like, I think I'm gonna die. I'm in my own hotel room. I've been here for a couple days now.” Ughh *exhales* And I never,I just-I drove straight back to Seattle that night. And I had the Sunday. And then Monday, I was at Virginia Mason talking to Dr. Leveque. Like, there was no point in that whole process that I could even, you know, make a complaint against Best Western or, or do anything. And then it's been two years and I still think about it. And in this moment, I still think about it. And it's something that traumatizes me, Dr. Singh. Like it, it makes me so—even more distressed, even more fear. Like I couldn't even cry. I couldn't even cry without being seen as a threat. You have a Black woman who's crying, and that is a threat to you.

Dr. Virtaj Singh: I mean, I can tell you, from my perspective, I'm - there's no part of me, that's glad this happened to you-and, but, I can tell you, it was very instructive to me. It helped me to-not that your whole life is about, you know, making me more woke. [Jodi-Ann: *chuckles*] But it made me understand that when I saw these episodes that were videotaped that everybody sees...and, you know, some people will be like, “Well, these are isolated incidents.” I'm like, “Well, for every, you know, Sandra Bland, there's 100 Jodi-Ann Bureys where it wasn't on video.” [Jodi-Ann: Yeah.] And we don't hear about this. And, you know, I don't know what I-what my experience with this whole awakening would have been, if not for you. For all I know, if I hadn't had your experience, I might be one of those, like, “All Lives Matter” type people. [Jodi-Ann: Yeah.] Like, Oh, these are isolated incidents. But you know, having somebody you know and care about have this happen to them, obviously changes your perspective and opens your eyes up. So, I don't know, had you not shared this with me, but I thank you for sharing it with me because it allows me to better understand what's going on with a group of people I don't have ready-access to right? 

Jodi-Ann Burey: Yeah. Yeah, you're right. And I think if the medical community paid more attention to these types of things, then maybe we’d have a stronger context for how to treat patients, you know? But you know -

Dr. Virtaj Singh: Every time I talk about your story-you know, not a lot but enough-to other providers, and I always feel like there's this resistance. There's always this feeling like, [Jodi-Ann: Ooh.] It's not me, it's other people. Or like when I tell people your experience with Joe? [Jodi-Ann: Yeah.] I get a lot of eye rolls in the sense of like, “She's being too sensitive” - type of thing. 

Jodi-Ann Burey: That's a deflection. 

Dr. Virtaj Singh: But that's the thing I, and that's why I'm sort of about this, you know, white coats for Black Lives movement, where it's like, Okay, so you know, we're white coats for Black lives. We're here to talk about healthcare disparity. - and 90% of our conversations are about the police and policing. [Jodi-Ann: Yeah.] Which is an important conversation, but that's deflecting our responsibility. We're not immune to, you know, our own biases and our own things. So, rather than us focus on fixing policing, why aren't we focused on fixing ourselves?

Jodi-Ann Burey: That's the question.

Dr. Virtaj Singh: Racism is always somebody else, right? It's never us. It's never our problem. It's always: I'm good. Other people are racist.

Jodi-Ann Burey: I think when people feel that, that's how you know, it's in you. *laughs* When you can't just settle and say, like, “Yeah, it's probably showing up here. Let me do some work.” When you're like, “Oh, no, that's somebody else.” That itself is an articulation of this bias. Right?

Dr. Virtaj Singh: I took one of those implicit bias tests - this was years ago, like before everything happened -and, I don’t know if you’ve ever done it, where you like, try to associate...

Jodi-Ann Burey: Oh I’ve done it. I have a bias towards dark-skinned people. *laughs*

Dr. Virtaj Singh: I failed it. [Jodi-Ann: Yeah.] I could not associate African American sounding names with like flowers or roses as quickly as I could do it with white sounding names. So we all have within us this sort of implicit bias that we don't understand. The subconscious-I don't know where it comes from, why it's ingrained in all of us. And if I'm not mistaken, studies show even, you know, African Americans are biased against African Americans.

Jodi-Ann Burey: Yeah, white supremacy is far reaching that you internalize it and work against your own people. Like, I mean, all of those things are present, right?

Dr. Virtaj Singh: Yeah, so if-I wish there was some way to carry that message of just sort of like look within yourself. And then, you know, look to help the world externally.

Jodi-Ann Burey: Maybe you're the messenger, Dr. Singh.

Dr. Virtaj Singh: Eh, I think you're the messenger, but I will help you. You're the one with the podcast. *both laugh*

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Jodi-Ann Burey: Black Cancer is created, edited and produced by me, Jodi-Ann. Thanks so much, Dr. Singh, for being my doctor, for being so open, supporting this podcast and for supporting me for all these years. 

To make sure that Black cancer stories become center to how we talk about cancer, you know what to do. Rate, subscribe, leave a review. Find us online at blackcancer.co and on Instagram @_black_cancer. 

Trauma comes with endless wisdom for ourselves and those around us. Tell someone you know—tell your doctor—about Black Cancer.

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