E3 S1| Reema Doshi’s Story of Living with Inflammatory Breast Cancer and How Women Can Empower Themselves in Medical Settings to Advocate and Get What They Want and Need

In today’s episode of the Sick and Seeking Podcast, I sit down with my dear friend Reema Doshi, who was diagnosed in 2017 with a rare form of breast cancer known as inflammatory breast cancer (IBC). Reema's journey through diagnosis and treatment is both enlightening and empowering, and I'm excited to share her story with you.

Join us as we navigate the complexities of seeking medical attention and advocating for oneself during a health crisis.

Conversation Highlights:

• Listening to Your Body: Reema emphasizes the importance of recognizing any abnormal signs in your body and taking the time to investigate them seriously.
• Busy Lives and Medical Help: We discuss how life’s busyness often interferes with seeking professional medical advice when it’s needed most.
• Collecting Data: Reema shares her experience of gathering pieces of information throughout her medical journey, and how confusing it can be.
• Importance of Early Diagnosis: We emphasize the critical role of early diagnosis in successful outcomes for breast cancer.r.
• Significant Moments: Reema reflects on the impactful encounters and knowledge she gathered during her treatment journey.
• Media Misrepresentation: Reema speaks about how the media often misrepresents the realities of undergoing cancer treatment.
• Supporting Others: Reema offers insights on how to support someone going through treatment, acknowledging that everyone’s needs are different.
• Post-Treatment Journey: Reema discusses her ongoing medical journey, the challenges of "chemo brain," and managing the fear of cancer recurrence.

Quotes:

“Women often lose months in getting diagnosed because they get stuck in this loop of not knowing how to advocate for themselves.” - Reema

“I wasn’t sure if the chemo was going to kill me or the cancer.” - Reema

“I am beyond my cancer.” - Reema

Connect with Reema:
Website

Resources:

• Know Your Lemons
• The IBC Network
• Terry Lynn Arnold's LinkedIn

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Transcript

leslie_field (00:01.53)
Hello, Reema. How are you? I'm doing so well. I'm so happy that you said yes to being on this podcast. I feel like the best way to introduce people who I know on my podcast is to say how I met them. So we met in London, I think, 17 years ago. Seventeen? yes. I also met my husband that summer, so I've also known him that long, which is also wild.

reema (00:03.88)
I'm good, how are you Leslie?

reema (00:22.67)
2005, yeah, this would be 17 years.

leslie_field (00:31.608)
I would say the moment that we really solidified our relationship, and we were laughing about this, is, you know, we hung out during the summer in London. We got to know each other. I was a little distracted to me and my future husband. However, the moment I think that really solidified our friendship was when Reema packed my suitcase to come home. And God bless you,

reema (00:53.774)
Well, for me, was I remember like you done a decent amount of shopping when we were in London. And then when you were trying to pack, like you were doing that. I think you were doing like the classic thing of like trying to sit on your suitcase in order to shut it. And I remember being like, come on, there's there's got be. So, you know, I am fortunate in the sense that I traveled a lot even when I was younger. And my mom is like.

leslie_field (01:14.012)
Correct.

reema (01:23.614)
a pro packer. Like, I still have not achieved her level, but like I've, you know, through osmosis have picked up some of her tips and tricks. And I saw like roughly how your bag was packed. And I was like, no, no, we can fix this. We can do so much better.

leslie_field (01:35.346)
no.

I, you know, I just really it really touched my heart and soul when you did that for me. I did do a fair bit of shopping. That is when I found out about London fashion and their clothing. Still my favorite place in the entire world shop. And I will never forget. Yeah, I was a mess. I still hate packing to this day. And you like came in and you found like 30 percent extra room in my suitcase that was not there before. You were a magician. OK, so that happened. And then I just.

And I still hate packing. And what you don't know, Rima, is when I still pack, I still think of you to this day.

reema (02:10.894)
Well, and that is actually not the only time that I've helped you pack, by the way. There was the time we were packing up your apartment in LA, I want to say, like before you moved back to London. Yeah, yes. And we were like, I helped you again. And that was that was the first time that Susanna tried Indian food, right? Yes.

leslie_field (02:15.451)
I think you.

leslie_field (02:19.612)
god, probably. Yeah, yeah. You helped me again!

leslie_field (02:31.194)
Yes, like all of us. That's so interesting. Memories. my gosh. See, she's a golden, incredible lady. So, I mean, when we're not packing suitcases and living in London. Well, today I invited Reema on because she does have a medical journey that she's been on. And I'd love you to share about with me and with everyone else who's listening about, you know.

reema (02:36.732)
Memories.

leslie_field (02:58.49)
what happened and a little bit more about you and your medical life.

reema (03:02.498)
Yeah, sure. So the short version, well, there is no short version of this. And I think the benefit here is to actually walk everyone through the longer version of the story. back in 2017, I was at the time living in the Netherlands and I noticed an itch in my right breast. And that was it. There was nothing else that I could point to, but just this deep itch.

behind my nipple, I guess I would say, and like, just, couldn't get to it. But because there were no other symptoms or anything else, you know, I kind of...

ignored it a little bit. In part for two primary reasons, right? One is that because I was an expat in the Netherlands, I had never really gotten around to establishing primary care in the Netherlands. In fact, doing primary care in the Netherlands is not that common, or like preventative care. It's not as common as we do it in the States. And that's important because they have a, what's the word I'm looking for?

leslie_field (04:09.394)
like socialized medical system.

reema (04:10.606)
Yeah, socialized medicine. so like, it's, you know, getting in for an appointment can be very challenging. And so they focus more on taking care of an issue as opposed to doing preventative checkups and care. And then the second reason why I kind of put it off is because I was in the middle of moving back from the Netherlands to the States. So it was, you know, slightly distracted by all of that. So yeah, the itch started around July of 2017. Like I said,

didn't really have an explanation for it, really didn't think much of it either. I moved back to the States basically at the end of July, early August. And, you know, I was going through the whole process of being in a new city. You know, I'd never lived in New Jersey previously. So like trying to figure out apartment situations to, you know, being in corporate housing. I didn't have any furniture, so I needed to buy furniture. Like, was very much distracted with all of that. And then...

starting in October of that year, I suddenly had just...

like a whole slew of symptoms that I had not had before. And those encompass things like I noticed some skin changes around the areola. My breast was just heavy. that's the best way I can describe it. I noticed that it was also larger. Like I'd usually been pretty even between both breasts. And then all of a sudden my right breast was almost a cup size bigger than my left, which was unusual. And I started to just notice like just some changes.

leslie_field (05:38.022)
Wow. Yeah.

reema (05:43.692)
in like the appearance of the skin and it seemed like there was a little bit of discharge also coming out of my nipple. So all of that to say that like I could no longer ignore it. Like there was no good viable explanation here. And so ended up finally like scheduling some time with the GP. And in fact, because I called in like urgently again, I was new to the area. had not established like PCP care or anything like that. I my first appointment was actually with

nurse practitioner because I mentioned concerns about my breast and so they prioritized getting me in but made it clear that you know I'd be seen by the NP if really necessary I'd be seen by the doctor but like let's at least start with the NP. So I went in for my appointment and you know the thing that like surprised me the most right it was like I was my breast was feeling heavy it was like firm in a way that I'd not previously experienced but I recognized that in as much as

were told to like do a monthly self-exam, I didn't actually know what a lump was supposed to feel like, right? Like I, I'd never been given, I don't know, like a plastic equivalent of like what a lump should feel like. So I didn't actually know. was like, there's this firmness. Is that what a lump is? So I had the appointment with the NP and, you know, she did a breast exam. said there is no lump. but to be safe, you know, she ordered some blood work to make sure that, you know, there weren't any like

drastic changes in my hormone levels as well as gave me a prescription for an ultrasound. So we did the blood work, you know, obviously immediately and the results came out fairly quickly and my hormone levels were fine, right? So I had no lump. My hormone levels were fine. So, you know, I admittedly like slightly put off getting the ultrasound by a couple of weeks but you know, eventually did do it in part because I had an upcoming work trip to Switzerland.

leslie_field (07:28.663)
Mmm. Mmm.

leslie_field (07:37.606)
Yeah.

reema (07:43.342)
and I was going to be gone for an extended period of time. So I wanted to get the ultrasound out of the way. And I will never forget the ultrasound because when I was going through the ultrasound, the technician who was doing the initial read was like, I don't see anything. You're fine.

leslie_field (07:55.75)
Mm-hmm.

leslie_field (07:59.935)
mm-hmm.

reema (08:01.12)
It was a radiologist who came in and said, you know, was reviewing everything. And she's like, no, something is going on. Right. And what she actually did in the appointment is she took my hand, right. And she said, feel the temperature difference. Like she turned my hand around, like to the back and she put it against my right breast. And then she put it against my left. She's like, feel the temperature difference. And the right breast was significantly warmer. So, and obviously based on like the other symptoms.

leslie_field (08:18.65)
Yeah.

reema (08:31.024)
She's like, it's probably an infection of the breast. Now, I know nothing about infections of the breasts, but now what I know about it, had I known then, I would have been able to say that doesn't make any sense, right? Like you typically would get an infection of the breast somastitis if you are breastfeeding or if you have breastfed, right? Well, I'm childless, know, ain't nothing happened in that region. the fact that I was being told that it was an infection like

leslie_field (08:33.436)
Okay. Okay.

leslie_field (08:56.268)
Yeah.

reema (09:00.944)
I didn't have enough information to know that it didn't make sense. So she encouraged me to reach out to the PCP's office and get a prescription for antibiotics.

And then literally at the end of the appointment, just in passing, she just said, hey, if the antibiotics don't resolve your symptoms, then it might be this thing called IBC. That's literally all she said, IBC. And so I walked out of there a little bit baffled, like, what the heck is IBC? And so, of course, Dr. Google came in handy. And...

leslie_field (09:33.82)
I mean, we love Dr. Google. We shouldn't always use Dr. Google, but we still need him. We still need him.

reema (09:39.886)
Correct. Correct. Yeah, exactly. Like, I mean, this was more just like, what is it? Is it something that I should be concerned about? Definitely not trying to self-diagnose here. And don't recommend that at all.

leslie_field (09:45.915)
Yeah.

leslie_field (09:49.582)
Yes, no, no. And plus they said she said the words to you. And so that I think you first off, so many things. I just want to pause for a second. Number one, sometimes my breasts. I'm not trying to take away from your story, but I remember you telling me that was one of your symptoms. I mean, you had a bunch of symptoms, but one of them was the itchiness in your breast. And I think it's really fascinating because whenever you told when you told me that, I was like, man, I never would have thought about that because sometimes my

reema (10:00.995)
Yeah.

leslie_field (10:19.194)
Breast get itchy, but I get it. You were talking about a deep, deep itch, which is different. But it's these things that like like you were saying, you noticed it, but you put it off because of living in the Netherlands. You were busy. You were moving. This is like the story of so many people that you're just like, hey, I'm busy. Life is busy right now. I don't have time to deal with like that's our thought, right? That's kind of scary, but it's true. A lot of us go, I don't have time to deal with this, which is always fascinating to me because

it's our body and like we can't do all the other things if the body isn't going, but I still like have that stumbling block sometimes, right?

reema (10:55.732)
Well that and I think like, at least in my case, right?

The itch itself, an itch sounds innocuous, right? Like, yeah, you know, it could be a rash, right? But like, that's probably the worst thing that we associate most commonly with an itch. Like a rash, I don't know, maybe like a UTI, right? That's more burning than itching, but you know. I think those are the things that we classically associate with an itch. And I literally had, when it started, I had no other symptoms. It was just this itch. And so it's this thing of like,

leslie_field (11:15.734)
yes. Fair. Fair. Fair. Yeah.

reema (11:30.936)
going to go to a doctor about to be like there's an itch in my right like you know again it's in part because i was not informed enough to know that like no this is actually a symptom that you should go and talk to somebody a professional about but i i was lacking that that background and that information

leslie_field (11:50.477)
Mm, yeah.

reema (11:50.858)
Right? But yeah, so, you know, I guess maybe coming back to the story, it was, so, you know, after she mentioned literally just the phrase IBC, like she didn't actually even tell me the words, like what it stood for. I went and, you know, I started doing a little bit of research and just the like overlap between.

IBC symptoms, which I'll touch on in just a second. And then my symptoms like was freakishly high. And so what IBC is, which I don't think I've explained yet, but IBC is it refers to inflammatory breast cancer. Inflammatory breast cancer is a rare or I should say an uncommon form of breast cancer. Unfortunately, because there is no unique medical encoding number specifically designated for IBC,

leslie_field (12:24.347)
Yeah.

reema (12:44.205)
They're not entirely sure how many cases are diagnosed each year, but they estimate it's anywhere between 1 % to 5 % of all breast cancer diagnoses are of people with IBC. so, you know, reading through that, I kind of said, this is a problem. Like there's just too much overlap between my symptoms and what IBC is described as. And what makes IBC like

leslie_field (12:58.107)
Wow.

reema (13:13.284)
so difficult to diagnose is that there's so many reasons why it's difficult to diagnose. The first is that because it's so uncommon during medical schooling, they probably spend like a couple of minutes at most talking about IBC, right? So that's kind of one issue. Many PCPs will never see a case of IBC in their entire lifetime while practicing. In fact, some breast

will never see a case of IBC.

leslie_field (13:46.373)
Well...

reema (13:47.15)
The other thing about IBC is that mammograms can miss it. Ultrasounds are imperfect. So you need the combination of both a biopsy as well as a physical examination because so many of the symptoms are like a manifestation, like physically, right? So it's like the swelling changes in your skin and things like that. So you need that clinical diagnosis along with kind of medical diagnosis.

leslie_field (14:16.763)
Mm.

reema (14:17.104)
So takes both pieces to get diagnosed. So for me, seeing kind of the overlap, you know, I picked up the phone.

very fortunate to have a doctor in the family. My sister is a pediatric ophthalmologist, you know, not necessarily affiliated with oncology or breast, but like certainly a good sounding board, right, to start a conversation with. And so I reached out to her to say, you know, here's what's going on, here's like what I've done so far, and I want to push for a biopsy.

So I, you know, I had reached out to the PCP's office. They had written me the script for antibiotics and they'd asked me to come back in. So I had my ultrasound on a Friday. They'd asked me to come back in early the following week just to talk through like the fact that I was going to be taking antibiotics. So I kind of game planned a little bit with my sister to say, okay, I want to push for a biopsy while also

taking the antibiotics. So on that Monday or Tuesday, you when I went in, again, I was seen by the nurse practitioner, not by the doctor. And, you know, we got into a discussion around, you know, how to approach this situation. And she was adamant about me finishing the course of antibiotics before pursuing further diagnostic work. And for me,

leslie_field (15:41.466)
Mm-hmm. Yeah.

reema (15:46.638)
I had a couple of things that were top of mind. One was the upcoming trip, right? Like, should I be going to Switzerland or not? And then the second was that everything that I was reading about IBC is that it's not only very difficult to diagnose, but that is incredibly aggressive, right? Like the earliest it can be diagnosed is stage three. And in people as young as me, I was 32 at the time, it's more often than not caught at stage four. So I wanted to,

leslie_field (15:53.307)
Yeah.

leslie_field (16:03.162)
Mmm.

reema (16:16.112)
to get the diagnostic process moving in case that's what it was. So then speaking to the nurse practitioner, you know, was really pushing and advocating for myself to get a biopsy. I was determined, you know, to walk out of there with a prescription for a biopsy. And she was adamant about not giving it. So, you know, we kind of came to a crux or crossroads during our conversation where, you know, I basically

leslie_field (16:36.122)
Mmm.

leslie_field (16:42.46)
Crossroads, yeah.

reema (16:46.092)
just bluntly asked her like are you the person who can or cannot prescribe me a biopsy? And turns out that she couldn't. I actually needed to be seen by a breast specialist and in the same breath she also told me like I won't give you a referral yet to a breast specialist because she was wanting me to finish the course of antibiotics.

leslie_field (17:02.188)
Ugh. Ugh. Yeah. Yeah.

reema (17:05.556)
And so I said, okay, that's fine. Like I will call up breast specialist office myself. But do you have a list of ones in the area, even if you won't give me a referral? So he did manage to get that much out of her. And so, sorry, go ahead.

leslie_field (17:17.468)
Hmm.

Well, I was just going to say, no, I was just going to say that goodness and, know, I, goodness, that's where I want to start is goodness is that for as much as I'm like, my gosh, that's so horrible. Like given how we know things where Rima is going to finish her story and tell us, you know, the rest of it. but I want to say a but here. And it's a pause that, you know, we are humans. We're humans. They're humans. Everyone's just doing the best they can to find the protocol.

the rules based on the knowledge that they have. And so I don't want to say that this, you know, it's so easy to go, this person, this person, just how could they do this to you? But it's not really. I don't always want to get stuck there because everyone who's been on a medical journey has these moments where you reach roadblocks, you reach hurdles. And I know this is something you're probably going to talk about more later, but being that forceful advocate, I know Rima that you write about that. Rima has a blog which she'll talk about maybe a little bit later.

You you've you've said that in speeches that you've given about your situation, that being that forceful advocate, you know, oftentimes not often, but it does feel like sometimes we're like, I'm not the doctor. I'm not knowledgeable. I don't know all these things. So we we sort of, you know, you could say give our power away to a certain extent, like, hey, you went to medical school. You're the specialist. Like, tell me. And there has to be some of that because this is their specialty. This is their profession. However, however, there's always that moment of the knowing.

the internal saying like, Hey, hey, hey, I know something's wrong being that forceful advocate. And you shared this, Rima basically said this statement, but I want to re quote her again, cause you wrote this statement in one of your speeches you gave about, going through this whole process. You said, I refuse to be thwarted and simply asked, are you, or are you not able to order a biopsy on my behalf? And that must've felt like,

leslie_field (19:14.032)
Maybe not in that moment, but I'm just also really proud of you because sometimes I know even I'm like, I don't know what's happening. I'm emotional just for you to have that clarity of knowing what you wanted and what you needed. And to really like, I say, I be in your power in that moment, even if she said no, like if she said no, but you still were like persisted and you kept going. So I just wanted to pause there because that's important.

reema (19:39.682)
Yeah, well, and maybe a bit of like a sidetrack here really quickly, like, you know, to your point around like, there is no blame for this nurse practitioner, right? And I see that from two perspectives. The first is that there's nothing like going on.

a journey with cancer, much less something that's like uncommon or rare or orphan, however you want to refer to it, to teach you like how much we don't know about the human body, right? There's still so much to be learned and discovered. And in fact, being a cancer patient, default, you're predominantly a guinea pig in some capacity, right? Like, you know, you are receiving treatment, but they are studying the outcomes of that treatment. They're making adjustments then to treatment.

plans for future patients based on what they learn, right? So like, there's still so much to learn about cancer or, you know, chronic illnesses that maybe are not common or like have not been studied enough. So, you know, there is kind of that element of it. I think the second is I actually use this as a way of thinking about how how do we as women empower ourselves, right? Like there are so many studies out there that show us and tell us that women are

often dismissed in medical settings. And it can sometimes happen even with female practitioners, right? And there's nothing harmful that's meant by that. It's just, it's a statement of fact. Like we know that it happens. So if we know that that happens.

And we know that it's impossible to know everything about the human body, right? And that the people that we're talking to are human and they're fallible and, you know, they make mistakes. how do we turn ourselves into advocates for ourselves? You know, for so many of us, especially when you're younger, your experience with doctors is from a perspective of like.

reema (21:39.624)
simpler problems, right? It is, I have an infection, I need antibiotics, you know, I came to you, I told you my problem, you gave me the answer, like you must be all knowing. And that's so far from the truth. And so if we acknowledge that, right, that there's just too much to know that

leslie_field (21:41.296)
Mm-hmm.

leslie_field (21:51.013)
Mm-hmm.

reema (21:58.75)
as you start to toe into these areas where information is maybe not as obvious or the solutions are not as obvious, how do you start to empower yourself again to become an advocate? And it is about becoming informed and it is about having a voice and using that voice. And I think finding that in that moment was like, it was a new experience for me.

Because again, it had always been this thing of like, I'm going to a doctor, they're in a position of authority, they know what they're talking about. Of course, I'm going to listen to them. And for the first time, I was

There was enough information available publicly to tell me that when it comes to IBC, women oftentimes lose months in getting diagnosed because they get stuck in this loop of not knowing how to advocate for themselves, constantly being told that it's an infection of the breast and they lose time in that process. So having read that and knowing that I was determined to go on a different path. I also had the advantage of having, again, somebody that I could lean on who's telling me like,

leslie_field (22:43.931)
Hmm.

reema (23:05.628)
you can say these things, you can demand this service and if you're not going to get it at that office, you should go somewhere else. Like we will find a different option.

leslie_field (23:16.134)
Gosh. Yeah. And before you continue your story too, know, yes, you had this nurse practitioner, but I want to go to the other, or I don't know if they're the same person. The other person, maybe it wasn't also a nurse practitioner or the radiologist, whoever was just said that the words to you, the IBC. So let's also not forget about that person because these are these little kind of like breadcrumbs that are dropped on these medical journeys. So for instance, when I was

diagnosed with chronic kidney disease. They caught it through high blood pressure. So it was when my first semester at USC, both Ruma and I went to University of Southern California. That's how we met. Woohoo, fine on. And I was having extremely high blood pressure. Now I'm 18 years old in the best shape of my life, or so I thought, I'm a very healthy person. Now I was in hindsight having symptoms. Now when you have really high blood pressure or hypertension,

reema (23:52.76)
Fight on.

leslie_field (24:09.744)
You don't have symptoms. They call it the silent killer because it's just putting so much pressure on your body, your organs and your system. Now my vision was affected. That's how high it was. I was in like the one eighties, like really, really high. Now I didn't really also understand that I was 18 and I'm healthy and I'm in college and I associated high blood pressure with stress, which is one of the indicators and connectors. But it's all there are many reasons why you have high blood pressure. So I was to learn and I'm sharing this story because

It was through a general checkup with my gynecologist that I had exceptionally high blood pressure. But I was busy. First semester in college, I was getting ready for my finals. So the finals finally come. My gynecologist's office calls me says, hey, your blood pressure was so high, you need to take it again. And I remember, like, imagine an 18-year-old grumpy little woman, me, stomping over to the health center at USC. I had a final the next day.

And I was like, I don't know. They told me I need to come here, take my blood pressure, gave them my arm. And this is where it got really interesting. The nurse who was in there was like, whoa, whoa, whoa. Your blood pressure is really, really high. And I remember like looking at her, dismissing her and going, obviously I'm stressed. This is my first semester in college and I have a final tomorrow. And I was thinking, and this is not helping it right now. Like I should be studying. So she...

This is the key point that happened though on my journey. She's like, hey, before you leave and before I can let you go, I need to draw some blood. And I remember like I was a pouty brat. was like, here, here's my arm, take my blood. Like I was such a brat about it. She takes my blood. I don't know how fast she ran that test. Somehow she ran the test really quickly. In hindsight, I don't know how that happened, but it was like 30 minutes later. She was like, you know, I ran a panel.

reema (25:49.932)
you

leslie_field (26:03.78)
And she said, your creatinine is really high. And then I'll never forget the moment she's like, you needed to go to the hospital right now. And I was like, come on. Like this is and I'm a person who I don't like to be so dramatic. So to me, this felt very dramatic. I was like, hold on a second. We went from high blood pressure to you took some blood. need to go to the hospital and I'll finish telling my story another time. But it just shows you there are people who are on our story and our journeys who

I I meant to write her note. I think I tried to follow up and I'm still really indebted and grateful to that woman. And then the little other part I will say is I got my dad, my dad was near downtown LA, USC is near downtown LA. We drove to our local hospital and this was also interesting. We got into the hospital, into the emergency room. They took one look at me. I told them I had high blood pressure and they tried to just prescribe me something and almost turned me away. And it wasn't.

If it wasn't for me, and I remember this and my dad, we had the blood tests in our hand and I remember shoving them in front of the doctor and that's the all. And I'm telling you twice, they tried to bat us away and go, OK, you're fine. You just need to take a few pills and just go home. And then it was that moment I'll never forget. We showed them the blood work. I didn't know anything about creatinine and kidneys and why it was important. We showed the person. I will never forget that doctor stopping go, hold on. You know what? We should do some more testing. So that was my long little interlude. But

It just touches upon a lot of commonalities I hear when we're navigating this medical system and our own personal medical journey. So anyway.

reema (27:36.206)
Yeah. And to your point, there are, there are like, as cheesy as this sounds, there are little angels that pop up kind of everywhere, right? And like, that is eventually what happened for me, is that...

I so, you coming out of that appointment with the nurse practitioner, I I did start reaching out and calling a bunch of breast specialists just to see like who I could get in with eventually did get an appointment with one center and kind of in a similar situation. They're like, well, you won't be seen by the doctor. You'll be seen by a nurse practitioner. But like, we'll get you in. Right. And then in the meantime, you know, through my sister's network, she eventually found somebody

who used to be the head of the breast center at Hackensack, New Jersey, the hospital there, specifically the breast center. And she spoke to him, kind of walked him through my ultrasound results and like all of the symptoms, et cetera. And he basically told her like, this is IBC until proven otherwise.

leslie_field (28:44.269)
Oof.

reema (28:45.086)
So he gave her the contact information for the the current head of the Hackensack Center and my sister just took the chance and reached out to this doctor to say like here's the situation and you know I remember like I was not on the phone but I remember my sister telling me afterwards that she didn't think that it was her calling as a fellow physician that got through but rather it was because my sister ended up breaking down on the phone because of course

she was very concerned for me. And that's what kind of triggered this doctor to say, tell her to come in tomorrow. We can't give her dedicated appointment times. Like she's just gonna have to sit here all day and we'll squeeze her in. And I was like, yeah, of course, you know, I'll be there because to me, you know, it was A, somebody who was finally willing to maybe listen to me and B, this was clearly a place that had seen IVC before, right? So,

leslie_field (29:43.004)
Mmm. Yeah.

reema (29:45.0)
for those two reasons. Like I went and literally sat there the whole day. So they started, I want to say with the ultrasound.

or, and then they did a mammogram. it was like ultrasound break for a bit. Then they called me back for a mammogram. They took a break for a bit. And then finally they said, okay, we're going to take some biopsies. And so they took two biopsies. and then, you know, I went home, I came back the following day and you know, that's when they officially told me that I had IBC, which meant, you know, again, like that by default meant that I was stage three, obviously needed to do additional.

leslie_field (30:05.883)
Mm.

reema (30:23.162)
testing and diagnosis work to determine like if I had progressed beyond stage three. maybe it's, there's your like big stages like stage three and then you get letters within that depending on like where the cancer is. So in my case, I was three B because it was not only in the breasts but it was also in the lymph nodes under my like within the armpit. If it's moved up to the lymph nodes that are like up here right above your breasts then you'd be considered three.

and then of course stage four is if it's metastasized. So I didn't know where it was on the spectrum aside from minimum stage three. So yeah, from there it was a big whirlwind of decisions and changes and you were there Leslie and I think you remember like I had one appointment with an oncologist in New Jersey and then in the meantime, my, I'm single, I don't have any

leslie_field (31:09.08)
Yeah.

reema (31:22.992)
I don't have a partner and the idea of knowing that I like chemo was a given a mastectomy was a given Radiation was a given, you know to try to go through that on my own in a state We're like I didn't know a lot of people. didn't have a deep network It just didn't make a lot of sense. So my parents were are based in Houston. That's where I grew up and It also meant that with IBC I could get access relatively easily to MD Anderson, which is

one of the best cancer institutes in the world, genuinely. So for me, it was a no-brainer. And so I called, I literally had this appointment with the oncologist. I called MD Anderson. Again, I didn't know actually how difficult it can be to get into MD Anderson, but because I had something that was rare that they really want to study because it's a research institute, they were like, all right, cool. We'll get you in next week on Tuesday. So this was again, like I think I had my appointment on a Friday with the oncologist.

oncologist, I spent the weekend packing. I saw you before I flew out. You you came out to New Jersey to see me. And then I literally like fled. I took two bags to Houston. You know, my apartment was sitting there. You know, that was a whole separate journey. But yeah, that's a very long-winded explanation of my journey to getting diagnosed.

leslie_field (32:26.78)
Yeah.

Yeah.

leslie_field (32:46.52)
No, I think it's a very important journey to hear that there's so many important parts and pieces and just sharing your story. I'm really hoping that this is going to help someone else who might be in a similar situation or someone else who they themselves know someone who's navigating something similar to what you navigated. so I'm just everything you said important. And thank you. Thank you for sharing it. So.

You know what I also think is really important to talk about is how everyone responds to treatment differently because I think it was really interesting in one of your speeches that you were talking about that comparison and how it just isn't helpful. So tell me a little bit about how treatment was for you.

reema (33:29.666)
Yeah. yeah. Like, where do you begin? I mean, listen, like, this might sound hyperbolic, but like, the reality is, is like, when I was going through it, it was bad experience. Now looking back on it, it was whole-acious, right? Like, I, treatment was not, was not pleasant on so many levels. but yeah, in my case,

leslie_field (33:31.868)
She laughs now. I know. I know. I know.

reema (33:57.728)
Chemo in particular, so you you start with chemo. I was part of a clinical trial. over a span of six months, I received five different drugs. So I started for the first three months with...

a rotation of three different drugs every week and then the following three months I received two additional drugs on a three week basis. And chemo just took it out of me.

leslie_field (34:25.233)
Yeah.

reema (34:28.449)
There was a moment like towards the end of my chemo journey where I finally had an aha moment, right? Because I was talking to my oncologist and she finally told me, she waited till the end, but she finally told me, she's like, hey, by the way, the symptoms that you experienced, the side effects, some of them, we knew that they could happen, but you're the first time that we're seeing it in clinic. And that was finally like, it was such a release valve to hear it.

I wish she'd said it earlier, because I had gone on this whole journey from when I got diagnosed through starting treatment of what was my inner monologue, right? So I think first and foremost, the media does cancer patients no favors in terms of how they're portrayed, right? Like they're portrayed as like, they have some nausea, they're bald, but other than that, they're mostly okay.

That is the biggest load of BS on the face of this planet. But that's the reference point that most of us have is like, if we haven't witnessed it personally, then we can only rely on like what we've heard or seen indirectly. And so I...

I was walking around with this image in my head of women who are going through chemo and like maybe struggling with some side effects, but for the most part, functioning fairly normally. maybe again, struggling a bit, but like still doing all the things, right? Whether that's working their jobs, taking care of their children, you know, being there for their partners, et cetera. And I...

did not have the energy for any of that, right? Like when chemo first started, I was doing okay, right? But the side effects on chemo are cumulative. So like each week is worse than the other. And in the depths of it, right? Like at the worst points, I genuinely wasn't sure whether the chemo was going to kill me first or the cancer. And so like very, very, very basic things took so

reema (36:40.634)
so much energy. Just as an example, the just the idea of trying to bathe or shower would make me cry because it required so much energy from me. And so, you know, here's this dichotomy of this image that I'm carrying around in my head of like the level that I should be functioning at because that's what I'm seeing or that's what I'm seeing represented in the media. And then there was my experience and my reality. And so this inner monologue

leslie_field (36:49.5)
you.

reema (37:10.604)
that I had was around like, am I lazy? Like, is there something wrong with me? Like, why can't I do the things that everyone else is doing? you know, this is, it's not okay that I am the way that I am. And so I had to very, like, it happened gradually, right? But with time, I started to just give myself a little bit of grace, right? Like, first and foremost,

I have to recognize that I have so much privilege, right? I have the privilege or I had the privilege of not needing to worry about anybody else. didn't have a partner or children to worry about. So I could focus on myself. I had the privilege of not needing to work while going through treatment, right? Like it did mean that I eventually lost my job, but that's okay. I could afford it, right? I had the privilege of not only not needing to worry about anybody else,

but of going back home to family who without any question were going to support me. Right, had I even decided that like, I do want to get treatment in New Jersey, my parents would have moved there, know, moved in with me and they would have taken care of me, right? Like not everybody has that luxury. So like, I recognize all of those privileges and I had to come to terms with this idea of like,

because I was having so many side effects and because they were so intense, that my, I was actually expending the same energy that other people are. My body was just using it in a different way. And so the best thing that I could do for my own journey and my fight was to like kind of change my inner monologue to say, to again, to give myself the grace to acknowledge that like, actually I was expending the same energy. It was just being used in a different way.

And I was privileged to be able to let my body do that, right? To be able to solely focus on fight the fight, right? It was okay that I was sleeping 13 hours a day and that all I could muster up in terms of energy was to move from the bed to the couch during the day and maybe watch some TV. And that was okay, right? I was not, I was not broken or

reema (39:33.362)
not needing some societal bar for how I should perform by doing that. And that was what my body needed.

leslie_field (39:42.242)
Absolutely. It's so important that people hear what you just said. And when Reema and I were talking before this chat, it was so funny. this is, you know, those moments that remind me why I'm doing this, because my own personal story does come into this. I'm talking to a friend of mine who has her own medical story. Of course, I'm going to be thinking about myself. So when Reema said to me, you know, I had to remind myself that my body was doing other important work. And that is why

you know, I was feeling the way I was when you said that to me the other day, I was like, that's what I tell myself. I thought it was just me who did that. Like that's the way I have to calm myself down. I had a also chat with Julia, Julia LaFrancois, who I called my sister, very good. She's like a sister to me. And we were having the same exact discussion about how, you know, our bodies need their time. But often for me, what I struggle with and

That's why having that statement is so powerful. I struggle with my mind going back and forth, like the, you're lazy, what's wrong with you? The other side going like, well, you know, we need some rest. And then we were talking about how that internal dialogue can get really, really loud. And yet here you are just like laying on the couch and to everybody else, you just look like you're potentially lazy, which is ridiculous anyway. But I love having that statement. It's like, it finally came to me years ago. It was like, your body is doing important stuff.

Like trust her, trust that this is what needs to happen. and, you know, but let's, yeah, trust that it needs to happen, but also let's not forget. And I know you, you were great to, to recognize that you had a lot of privilege, but let's not forget though, even in that privilege, there's a lot of changes that are happening. Your whole life has now shifted and changed. Like you are not living where you thought you were going to live. You are trying to do some work to some capacity, which I know you were until

treatment came and you're like, all right, this I have to stop. This is impossible. So it's it's it's not just the just the illness itself. You know, there's a lot of mental taxing shifts and changes and stress and pressure that's going on, too. And what's also tough is that these things don't just like resolve itself overnight. Like this is a long, you know, takes a while to be like, wow, I'm waking up every day in my parents' house and I

leslie_field (42:08.816)
feel like I can barely get out of bed right now. mean, I remember speaking to you during this time. I know it was a lot for you and you just kept going and you just kept being the Rima I know who you're smart. Nothing stops you. You're going to get to the bottom of this. And actually, that was maybe the next thing that I wanted to chat about is that

You always, I noticed this about you that I wanted to call you, I wanted to check in on you. Well, first, and we'll get to this point in a minute, the not knowing what to say or do, we'll talk about that in a second. But first, what I loved about you, no, what I thought was interesting about when I would speak to you is that you always wanted to talk about me or what's going on in my life or other things. At first, I thought it was really weird. And then I was like, no, I think...

I get it. She doesn't want to talk about being sick all the time. Like, I get it. And I love because you talk about that in your speeches. That's part of how you want it to be when you're going through treatment. Right.

reema (43:09.538)
Yeah. Yeah. So it's interesting because I feel like when you go through treatment, it's like this slow erosion of self and identity, right? Like you get lost in this world of cancer and chemo and being caught up in your thoughts and your emotions. And I would say like also this is somewhat linked to the whole like not knowing what to say, but also like

It is a rare quality for people, even those who love you, your friends and family, for them to know how to let you process your emotions out loud. And...

And off again coming back to this whole point of like not even having the energy like it's not that I didn't have the thoughts or the the feelings or whatever But like I didn't even have the energy to verbalize it right? So like there's this whole thing of like, okay, we can talk about cancer I'm probably gonna give some trite answer about how I'm feeling because like I just don't even want to think about everything else but just the other element around like How do you retain some sense of identity and some sense of normalcy? and for me that was through like

reminding myself like, yeah, I'm going through something shitty, but like, the world is still moving and my friends are still experiencing things in their life, both good and bad. And I still want to be a part of that. I still want to hear their stories. And if anything, like that's a way for me to remind myself like there's something beyond this. There's something that will come after treatment, you know, God willing, but

That was so important to me because it's like, you could very easily just constantly think and talk about cancer and like honestly, it's boring after point in time. Like you drink from a fire hose, like you're surrounded by it all the time. Like the last thing that I wanted to do was then get on a call with my friends and only talk about that. Like to be clear, it was a subject, like of course, but I didn't want to focus only on that because then you just...

reema (45:19.471)
it becomes, I don't know how to explain this, like what's been very important to me from.

from early on is that while this is like, obviously a big theme in the story of my life, right? Like I cannot ignore it. I do not want it to be the defining theme. And if I use that as like my guidepost for how I live my life, right? Then that also means if it doesn't define me, then that shouldn't be the defining thing in my conversations with people that I love. So yeah, it was really important to me to remain

engaged and hearing about what else was going on. And I'll fully admit, I didn't always have the capacity, but I was always transparent in those instances too, to say like, I just don't have the bandwidth for this today or right now, but I love you and I still want to hear about it in the future.

leslie_field (46:14.414)
Yeah, I just you always have such a wise way about who you are and your words and your thoughts. And of course, you would have made all those connections. Of course you would have, Reema. You're just, you know, you're my friend. So I love you. And I feel like everyone who's going to listen to my podcast is going to go, well, of course you love these people. They're like basically your friends and family. I'm like, yeah. So they're just going to hear me saying I love people all the time. But I do. I love you so much. And

reema (46:43.35)
likewise.

leslie_field (46:44.092)
I think one of the things I think would be good to tease out a little bit more is that not knowing what to do or say. And that's really interesting. And I was being really honest and vulnerable with Remo when I said that, that even I struggled sometimes. know, it's interesting because I have my whole medical journey. I have tough moments that have come up and different times I've had to share with my friends.

I know they must sometimes feel the same way with me, like, how do I connect with Leslie or what do I say or what do I do? And then here I was, you know, witnessing and hearing one of my very close friends going through this and I really did struggle with that. And so I would love to hear any thoughts you have about, you know, was there anything that, was there anything that people said or did that, you know, that people did for you that maybe could help others think about how they could.

be with someone in a similar circumstance.

reema (47:38.562)
Yeah, totally. Before I answer that, should I pause because of the sirens? Okay.

leslie_field (47:42.172)
Yeah, I love it. My people in New York City or San Francisco have sirens. You're a big city people. love it. No. Big city people.

reema (47:51.615)
We're big city people. I think it's mostly gone. Yeah, so the like what to say thing and what helped. I'd say there's probably two or three things.

leslie_field (47:56.657)
Yeah.

reema (48:07.63)
And the first is a disclaimer, everybody is different. And like what I say is what worked for me. And for somebody else, it might be completely different. In my case though, like I had several people come and tell me like, I just don't know what to say. And I'm like, honestly, all I need you to do is to say that it sucks what you're going through. And I'm here for you in whatever capacity you need me, right? Or whatever capacity that you are able to bring to the table.

Just like this sucks. It recognizes my situation. Like I feel seen.

But it also avoids all of the trite stuff of like, it's gonna get better. my favorite, and I say this very sarcastically, is when people tell you that like, you're only given what you can handle. Like, no, okay, I'm sorry, I'm gonna curse, but like, fuck that, right? Like, I do not want to be handling cancer. I don't care that you think that I can get through this gracefully. Please save me the trite phases. Just tell me that this is a shitty situation.

that you're sorry that I'm having to go through it and that you're here for me, right? So you think that that's like...

kind of an umbrella statement of just like, what can you do? I think the second is coming back to what we were just talking about earlier, right? Like you can temperature check this with the person, right? But in my case, like I made it very clear upfront, like treat me as normally as possible, right? Like talk to me about the things that are going on in your life. And that was again, really important to me because it helped me ground myself in something outside of cancer. And you know, again, ground myself in like my broader identity.

reema (49:52.045)
So I think that's another thing that can be done. And then the final thing is that like...

You know, people were so generous when I was going through treatment and like, I've never received such a deluge of gifts and like random things showing up on my doorstep and it was lovely. But what mattered to me more were the messages that were included, the cards, even like the little two sentence things on an Amazon gift, you know, of just like, hey, I saw this and I thought of you or, you know, you know, keep up the good fight or like, you know,

whatever it is, but like those messages or people like reminiscing about like fun times that we had or you know, whatever like again, reminding me of like that I'm loved that I'm cared for and not.

I am more than just what I'm experiencing in that moment. like to me, those are the ways to get around or navigate through this like, I don't know what to say, right? And trust me, I've been there, right? Like despite having gone through what I've gone through, when I hear somebody else going through, you know, a cancer diagnosis, I similarly have a moment of like, shit, what do I say? It's like, well, what did I want to hear? And like that may or may not be what that person wants to hear, but it's a starting point. What I would say though is like above all else, don't

not say anything, right? Like send that message. And even if you just send the message to say like, I'm thinking of you and I don't know what to say. Even that alone is just a reminder that like, you're there, you're present, like you were thinking of that person because silence is probably the worst thing, right? Cause then it's just like, is this person, I even their friend? Like do they remember me or have they disappeared on me because I'm now going through something serious, right?

leslie_field (51:21.521)
Yeah.

leslie_field (51:31.098)
Hmm.

reema (51:41.7)
That is a very real thing that happens. I was very fortunate to not experience it. There are plenty of people who do experience friendships disappearing after a cancer diagnosis. And so, in whatever limited way, those few words that come to mind, just send it.

leslie_field (52:01.18)
Yeah, I'm glad you said that. Absolutely. And now I've gotten into my very much like woo woo spiritual side. We haven't talked in a while, Rima. We'll chat. I believe in a lot more and understanding a lot more connected to energy. what I'm realizing about that is it's just it's a so for instance, I knew that I was like, I don't know what to say to Rima. But there's something about me just like being so like caught up in my own self that I'm not.

kind of giving use, attention and care. I know that sounds weird. What is that attention and care? Something as small as a text message exchange is me like saying, I'm giving energy to you. Like you're important to me. You're someone I think about. You're someone I care about. And I'm starting to realize that there's a lot of potentially healing, know, restorative, regenerative, like love and that energy helps you when you're going through these really shitty times, whether it's a cancer diagnosis or

losing somebody or like a divorce or whatever. I'm starting to realize that and I'm so glad you mentioned that, that it's just important to sort of recognize it and just say, hey, I'm thinking of you and I just, I love you.

reema (53:12.43)
Yeah.

And I think the other two parts to that, right? One is that like by just saying that you also create the space, right? For that for whoever's going through it to to be honest, right? Like when you say like this sucks, I don't know what to say, but I'm here for you. Like great. I know that like if I'm in a moment of emotion that I can probably come to you, right? Because despite being with family, right? That was actually one of the few places where I didn't feel comfortable expressing my emotion.

because I was very cognizant of the fact that like my parents were already very worried about me. And if I add my emotional load onto them, like that's just gonna exacerbate their fears and their emotions. And so I didn't actually express a lot of my fears to them. know, like when I cried, I typically cried in private, you know, it in the shower that I would usually cry. It wasn't in front of my parents because I just didn't want to

that load on to them or it was when friends came to visit you know and I had a moment to break down with them like I did it in those times so you know by acknowledging that you create the space and then I think the other thing that I'll add and I meant to say this earlier is that treatment is long grief is long

You know, people show up in the first few weeks initially after a diagnosis and then, you know, life is busy. Like, of course they, they maybe forget or you're not front and center or whatever. but for anybody who's going through something over a long term, like space out your, your kind of engagement, right? Like they will get an influx of messages in the beginning and you, know, you should certainly be a part of that, but like, don't forget to check back in three months later, six months later, et cetera. Like my, my entire, like.

reema (55:05.708)
immediate treatment like chemo, surgery, and radiation. All told was a 10-month journey, right? That is a long stretch of time. And, you know, I knew from the get-go, like, who would probably be the people who would still be texting me, you know, 10 months down the road. But there were the people who surprised me too. And that meant so much that even 10 months later, right, they still remembered me and they still remember to reach out.

and just remind me again that like I am more than just my cancer.

leslie_field (55:41.528)
Absolutely. Yeah, that's really, really important. Like I said, that what you've been sharing. So thank you, Rima. And I mean, how are you feeling? How are you doing right now? Feeling pretty good, I hope. I know it's a bit trite. I'm like, you're feeling good, right, Rima? You're good, right? You're fine? You're good?

reema (55:53.838)
Yeah, yeah, it's... Yeah, yeah, yeah, yeah, like, yeah, you're good. Yeah, everything's fine, right? Yeah. I mean, yeah, it's a yes. Like, I've found a new normal, right? And, you know, it's, again, it's very interesting to get to the end of a cancer.

the treatment journey, right? And to finish up all the kind of immediate aspects of treatment and like, and everybody just wants to be like, okay, you're done. Everything's fine. Like you're back to normal.

leslie_field (56:23.716)
I know. Did you hear me? That's where I was going right now, right? I was like, you're fine, right, Reema? We're good. We're good. End podcast. I know. I know.

reema (56:27.798)
Yeah. Yeah, everything's good, right? Yeah. Yeah, done. Done. End scene. But yeah, no, like clawing, you don't know how far you've fallen, right? Like, I mean, your body has been through the rigor after that much treatment. You know, in my case also, like.

it was even more, right? Because at the end, I did not just have radiation on daily basis. I actually had twice a day radiation, which is unusual. So, you know, I was like mentally, emotionally, physically fried, literally and figuratively, you know, and kind of crawling your way back out of that, right? Like there's a very long...

leslie_field (57:06.694)
Yeah.

reema (57:15.466)
uphill battle coming out of that to some sense of who you were pre-cancer in terms of like energy levels, in terms of like how you manage fatigue, how you manage your emotions. Also in terms of like chemo brain is a very real thing. And the way that chemo brain can manifest is that you're very forgetful. You're

you're just not as intelligent as you used to be. Like your brain just doesn't fire in the same way or it doesn't make the mental connections that it used to do. And there are ways to improve. It never completely goes away. Like I still have moments where I struggle with it, but it has improved significantly. But yeah, that whole journey was probably...

a year and a half maybe kind of coming out of it so like now today I'm I feel good I

struggle with some side effects, right? And that's, mean, hell, who knows if that's just aging, if it's side effects of being on tamoxifen. Tamoxifen is a drug that it doesn't reduce the amount of estrogen that your body produces, but it does prevent it from binding in certain places to certain cells. And it's kind of in a bid to try to help prevent a recurrence. And tamoxifen comes with a whole host of side effects, you know, so like there are are all of the

leslie_field (58:42.214)
Hmm.

reema (58:44.62)
things where it's like, this is just my new normal. And so, you know, it's there. Like, I'm doing well. I cannot complain. You know, I still go every six months for checkups. You know, I'll be very frank and say that I do still struggle with the fear of a recurrence. You I think you and I were talking about this before that I've started to come to realize that

leslie_field (58:47.985)
Yeah.

reema (59:07.82)
that fear is a lot like grief, right? I think there's a school of thought or philosophy out there that grief never really goes away. It never really diminishes in size, but that your life fills out around it. But in the moments that you're confronted with that grief, it feels the same way. It takes up the same space. And I'm starting to realize the fear of a recurrence is much the same way, right? That like initially coming out of treatment, it was very front and center, like just almost the only thing.

that I could focus on. And with time, as I've kind of returned to some sense of normalcy, I've started working again, you all of those things, like my life has filled in around it in a beautiful way, right, in a way that I cannot complain about. But I'm very regularly confronted with that fear of a recurrence. It can feel like a guillotine hanging over my head. And so in those instances, having to learn the techniques of like,

acknowledging that that fear is there, like feeling it, experiencing it, and then also learning to like put it back down. Like it is going to be a companion on my journey, but you can't live in that fear constantly. And so like it's there. You need to acknowledge it. It hasn't diminished in size or shape, right? Like when I'm confronted with it as real as it was, you know, back in 2017 and 2018, none of that has changed.

But I've figured out the ways to like, again, experience it, acknowledge it, and put it back down, right? And then continue on with my journey. So yeah, I say all of that to say I'm doing well physically, mentally, emotionally, all of those things. But then there are the things that like have changed. And it's not maybe a bad thing either, but it's there.

leslie_field (01:00:48.835)
Yeah.

leslie_field (01:00:53.872)
Yeah

leslie_field (01:01:04.55)
Yeah, I think these medical journeys, diagnoses, what we have to do, we're managing, yeah, it's still with us. And I totally hear you and I identify with a lot of what you're saying. Every time I go and I see my doctor, I forgot until recently, this year actually, that I was diagnosed 20 years ago.

reema (01:01:28.014)
Wow. Yeah.

leslie_field (01:01:28.184)
So it was 20 years ago that I was even diagnosed, which is I was like, now it's like two decades. So feels really big. But even now, every time I go and I see my doctor and the week before I go get the blood work and then when I see the doctor, it just there's always that, you know, lump in my throat, the stomach sort of goes. And it's always a topic of conversation with the therapist. And that's 20 years of carrying that with me. So.

Yeah, it's real and I totally identify with what you're saying. So, but I'm glad. But again, I'm glad that you're given the circumstances me and you are doing really great. And we had beautiful lives and all the things are happening. We're in a conversation together, sharing your story. And ultimately, I know helping others who could benefit from what you shared today. So thank you, Rima. I do want to hear, though, before we go.

reema (01:02:07.032)
Yes.

leslie_field (01:02:24.412)
I like that we renamed it, not renamed it, the dozen, because dozen seems like an easier kind of term to remember versus a number, the dozen potential signs or flags for breast cancer. Do you actually know them? Or no?

reema (01:02:37.687)
I don't know. You know, you would think at this point in time, I'd know them all off the top of my head, but I don't actually. Because it doesn't is a lot to remember. Yeah, you know. But, you know, I think the key message here is that coming back to or threading back to something I said earlier in the conversation as women, you know, the tool that we're given in terms of like.

leslie_field (01:02:44.334)
I know, I'm fair, fair.

reema (01:02:59.776)
checking ourselves is to do a monthly self-exam and to check for lumps. But lumps are just one of a potential dozen symptoms that could indicate that there is something problematic. And those symptoms could be an itch, they could be heaviness, they can be swelling, they can be changes in the skin, can be changes in the ureola. There are many others, clearly I'm not listing them all. But the important thing to remember is that, again, not only are there

leslie_field (01:03:22.618)
Hahaha

reema (01:03:29.68)
are many different symptoms. But the other element of all of this is that the latest stat is that either one in seven or one in eight women will be diagnosed with breast cancer in her lifetime. to date, the most powerful tool that we have, when you hear the stats around long-term survival rates for breast cancer, the most powerful tool in contributing to that is an early diagnosis, not necessarily multiple treatment options.

It's an early diagnosis and more and more young women are getting diagnosed with breast cancer. So what I encourage everyone to do is there's an incredible website. It's called knowyourlemons.org and they go into much more, much better detail than I just did on like the dozen symptoms to look for. And so I'd encourage all of you to check it out and you can think of eight women in your lives ranging in age.

share that information with them. Like had I known about all of these other potential symptoms, I would have been that much more powerful of an advocate for myself. I just didn't know, right? Again, breast cancer equaled a lump. But when you think about the fact that I didn't have a lump when I was diagnosed, despite having a stage three diagnosis, there was no lump. I was experiencing multiple symptoms. I...

I had a point, I was going somewhere with this.

leslie_field (01:05:00.028)
It's a, is that chemo brain side effect coming in? Not to tease you, but I can tease you because you're my friend and I love you.

reema (01:05:04.078)
Probably, and probably. you should. but really I was going somewhere with this and now I'm struggling. What did I say? What did we say before?

leslie_field (01:05:16.086)
we went to the dozen signs of breast cancer. You were talking about knowyourlimons.org, eight different people in your life that are women you could speak with, importance of early diagnosis.

reema (01:05:27.66)
Importance of early diagnosis, okay. We'll have to cut out this little section in between.

leslie_field (01:05:30.588)
Okay, we paused that section. All right, keep going.

reema (01:05:34.89)
Okay, but yeah, you know, knowing a little bit more.

than I did at the time. Again, I would have just been a more powerful advocate for myself. And so my goal is to just ensure that as many women as possible know about all of the different potential symptoms just so that they can be advocates for themselves. And this is where like, don't limit yourself on age range, right? Like for those eight women that you're going to go tell about this website, make sure that they're spread across age ranges. Like when I was diagnosed, I fell out.

of the parameters of any kind of like normal diagnostic process. And so that meant like it was a very different journey than like if I was 40 and above getting a normal mammogram, et cetera. Like I was completely outside of the bounds of any normal structure. And so I needed to pursue a non-traditional approach, but doing that required being informed.

leslie_field (01:06:33.326)
Absolutely. And informed on things that you referenced this earlier, drinking from a fire hydrant. Absolutely. It's not like we're like, let's just jump into the literature all about IBC. It's like you're just learning on the fly and you're just taking it when you can. And let's also not forget, and we could have a whole podcast on that, that oftentimes, especially with your diagnosis and the different treatment, the different medications you're on, it was really complicated when you would talk to me about it. And

Let's not forget that you're trying to take in all that information and you're not feeling well and you're freaked out and you're very hyper emotional. You're not. So let's just not forget all of these things are at play. So I always say that if you can, if you're going through treatment or any sort of medical journey that you're on, if you have someone in your life that can be there for you just to just to help you navigate it, it really does. It's really important. It really does help you.

in those moments when there's a lot to take in and consider and we didn't even go there. That's part two, Rima and I can have a whole topic on that. thank you for sharing. Yeah. Thank you for sharing that website. KnowYourLemons.org. Also, I know that there's some websites specifically dedicated to IBC and I believe you also have a blog that you might be willing to share. Could you maybe, I'll put them in the show notes, but could you share that information with me on the podcast now?

reema (01:07:39.339)
Absolutely.

reema (01:07:57.262)
Of course. So a good website to learn more about IBC is the IBC Network Foundation. Just a really quick intro there. It is a foundation that was started by a woman named Terri-Lynn Arnold. She is like...

the mothership when it comes to IBC. She went through an incredible journey of her own to get diagnosed and then has since dedicated her life to trying to help fund research for IBC. also, historically, information readily available on the internet in terms of IBC was very sparse. was hard to find. It was incomplete. And so as part of the website, she's done a

to like create this one central home for all of this knowledge. So highly recommend the IBC Network Foundation as just a point to learn some more. And then my blog, unfortunately, is not searchable on Google for whatever reason. That was not intentional on my part. But I started it at the start of my journey. I am no longer maintaining it in full transparency. I kind of finished it after, basically as I reached the end of treatment.

And the website is rimadoshi.wixsite.com forward slash a dash of sass as one word.

leslie_field (01:09:25.34)
that's that's a perfect lead into my last question for Reema. So thank you for sharing those two resources, including your blog. I'm going to link, as I said, to both of those in the show notes in case anyone wants to look up more information or read a little bit more about your journey. So I like to close speaking about.

the people I'm speaking to, speaking to them and highlighting that they are not just this medical diagnosis, this medical journey. There are so much more and we've talked a lot about that. But Rima, I would love you to share who you are, your wants, your desires, your wishes, your likes. I think you had a little something that you had written that you wanted to share. So please tell us who is Rima.

reema (01:10:07.626)
Yeah, listen, I'm a lazy human being. Talk about an inner monologue. Correction, I think we should use leverage, right? So if we've created something, we should leverage it. So when I wrote the blog, I had a little about me section. And I figured that that is the best summary of who I am.

beyond my cancer. So I will just read that for everyone's sake. So I like to say that like everyone else out there, I'm a host of contradictions. I'm a dreamer and a realist. I'm a romantic at heart, but super practical on a day-to-day basis. I'm a wanderer who loves to make home different parts of the country and the world.

I'm an incredibly loyal person who is forever baffled by the concept of favorites. Why limit yourself to one of anything when there's so much variety that fulfills you in different ways. I'm super sarcastic and super sincere. Not that those two are, you know, opposites of each other. And finally, I aim to live life gracefully, but with a sense of humor. Hence the name of my blog being a dash of sass. And so for those who do decide to visit the blog, you know, hopefully that gives you more depth and insight into who I am more so than I

can do right here.

leslie_field (01:11:23.448)
Yeah, well, it's perfect. She's a woman who knows herself because I couldn't put it better who you are. And I forgot your blog was named a dash of sass. Sounds right. Well, thank you so much, Reema. It's been really special and beautiful talking with you today. So thank you.

reema (01:11:40.69)
Thank you so much for having me. I love the fact that you're doing this. I think it's so important to remove the stigma around illness and especially chronic illnesses. so kudos to you for taking this on and thank you for having me.

leslie_field (01:11:55.516)
Thank you. Thank you.