The Medical Detectives - Rachel's Story: Not Just Anxiety

Episode Date: July 9, 2025

In this deeply moving episode of The Medical Detectives, Dr. Nance sits down with Linda, speaking on behalf of her daughter, Rachel Yaffe. When Rachel was a freshman in college she had unexplained aches that were labeled as psychosomatic by doctors. Years later she is given a diagnosis that changes her life. Linda recounts every heartbreaking misstep, every groundbreaking treatment, and the journey that turned her shy girl into a voice for change. Through triumphs, setbacks, and Rachel’s unwavering determination to live fully, this story shines a light on the broken edges of our medical system and the power of believing in one another when all else seems lost.Have a medical journey to share? Email us at [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hey everyone, Dr. Nance here. I am actually solo this week. And before we start, I do want to put out a bit of a warning. This is a very, very sad story. And so some people need to know about the headspace they're about to get into. And this is actually a story that I asked our producer, Molly, to find our guest. I believe that this story needs to be heard in this type of format where we can really dig into. This is actually a young woman who many people have seen her

on social media, on TikTok. Her name is Rachel Yaffe. And we actually have her mother telling the story on her behalf. So I can't wait for everyone to hear the story. One little tidbit is we have been talking for the past couple of weeks about this framework about the seven stages misdiagnosis and my TED talk was actually just released on YouTube.

So if anyone is ever interested in finding that story, because we talk about that pretty much in every episode now about these stages of misdiagnosis, it's live for everyone to listen to the talk. And I think it helps, again, give people an emotional framework for how to handle having a misdiagnosis. So with that, let's get into the episode. Hi, Linda. Welcome to The Medical Detectives. Thank you so much for joining us today. Oh, thank you for having me. Now, to all our listeners, we invited Linda on to speak. She's actually speaking on behalf of her daughter, Rachel.

And Linda, I'd like to start by asking, what was Rachel like as a kid? Rachel is the oldest of my three children. She was born in 1996 in a suburb of Baltimore. She was a happy kid. We had a pretty idyllic neighborhood, nice families, nice kids. I mean, she was always shy, but that wasn't really that unusual because rumor has it, my husband and I were shy. So she was shy.

She liked to stick close to home, close to my lap at birthday parties. But I would say a happy, but shy little girl. And health wise, was she pretty healthy? Or how would you describe her in that regards? I would say she was physically healthy. We live, as I said, in the suburbs of Baltimore. We're about 20 minutes from Hopkins and Maryland. And if you're familiar with Baltimore, there's a lot of excellent

medical people in Baltimore. So we probably in our little neighborhood had at least 10 to 15 Hopkins doctors. So I had confidence in the medical system and I took her to all the pediatricians where Hopkins trained. Everybody had an excellent education and she was deemed healthy by the doctors that she went to. And so talk to me a little bit about when you first started to notice some changes in her health. It was more it started, it was her anxiety. So when I was younger, we didn't use the word anxiety.

Kids were shy. That was the word you used. I was shy. But when she started to interact with the school system, I think that's when the word anxious started to replace the word shy. Can you describe how the anxiety manifested in her as a six-year-old? Yes. Yes. I remember going to the parents week. You go and the parents show up to the parents week you go and the parents show up. And the kids had to introduce their parents and she was just distraught.

She never liked to be the center of attention. She would get tongue-tied and she started to cry just being asked to introduce us. And then I remember at the holiday recital or concert, she didn't even wanna get up on stage. She didn't even want to get up on stage. She didn't have a main part. She was just part of the chorus, but that also caused her incredible anxiety

to be up on stage and watched. And in addition, we started to notice there was some other things going on. She didn't like her birthdays. She didn't want to get older. In eighth grade, she didn't go to school for two weeks. I just think the anxiety was really, really weighing on her. So it was a lot.

Yeah, and I think this is something helpful for any parent that's listening about where is that line between just having some anxious feelings and having something that could be helped with intervention is that if it is preventing your child from doing their normal everyday tasks, that's a sign that you should probably speak with someone who can at least evaluate the situation further.

And that's exactly what we did. When she wouldn't go to school for two weeks in the eighth grade, I took her to a therapist. It was time to get some help. And she did start on a low dose of Zoloft, which really seemed to calm her nervous system down. And she was already a really good athlete. Again, because she didn't like the participation component, we had found that sports, which was nonverbal, she really excelled at that. So she was already a good athlete. She was a good friend. She was a nice girl. She felt smarter. She felt more confident. And she really, I think she really did well. So it sounds like she is doing great both academically, socially, and athletically throughout high school.

What happens next? What happened next is then it's time to think about going to college. She was doing well in sports. She was doing well at school. So in 11th grade, the college coaches came calling. So when GW offered her a very generous athletic lacrosse scholarship, she said, I'll take it. So we were like, okay, great. Let's do it. And so she accepted an offer to attend GW at age 16 and life's good.

She's got a boyfriend. She's got a lot of friends. She's popular. She's got a boyfriend, she's got a lot of friends, she's popular, she's already into college. She was in a good place and then 12th grade came. She had some aches and pains which we always attributed to playing sports. Some knee pains, Achilles pain, a couple concussions, you know it's just the way it goes. Again, always taken to great physical therapists. Everything was pretty good. This summer in between high school and college, I noticed she was running a little funny. Again, I thought it maybe it was just her knees or

something. Maybe it was, maybe it wasn't. I don't really know, but she started to run a little funny. And then she went into GW and when your kids go to college, they start to be treated like adults. She's 18 at this point. She's a scholarship athlete. Communication does not go to the parents. So when we took her to GW, we moved her in and within days of moving her in, I was receiving a lot of panicked phone calls.

One of which stands out in my mind. It was 2 a.m. She told me she was laying on the floor of the bathroom in her dorm room. There was two other roommates and she was trying to be quiet, but she was totally panicked about the run test the next day. And I just remember thinking, this is not good. She's having a total meltdown. And she got out of that run test.

I have three younger brothers who were all division one athletes. And for people who don't know what the run test is, you spend any time on TikTok on any particularly girl who was division one athlete, this run test is a run till you puke type of gauntlet of different sprinting and running and weightlifting and trying to measure your peak VO2 max. sprinting and running and weightlifting and trying to measure your peak VO2 max. And when you ask these women, what did that feel like?

They'll tell you it felt like torture. It's like a military type test would be the best way to describe it. So I can certainly see how just the test in itself would provoke a lot of anxiety, but also the physicality of the test also causes extreme distress in the athletes. And for me, going back, it was always, should I drive down there or should I stay here? At what point do I let her work through this? So I let her work through a lot of that, but she got out of the run test. And I think GW was starting to get concerned about their number one recruits.

She had headaches, she had knee pain and calf pain. And so at this point, GW being part of their own hospital, their own practitioners, the athletic department took control and started sending her for tests. This was really the first time she was now being treated as an adult with practitioners that we did not know. So this was kind of the first time that we were seeing how adults are treated by the conventional medical system. And it's not pretty. You have all these different specialists

that don't necessarily, they treat the body as if it's just a bunch of parts. So they scan the head, they scan the calves, they scan. She was having right shoulder pain and everything was scanned independently, but there was no holistic view of her whole body. Prior to that time, we lived in a way where most of the doctors we knew

and I had accompanied her to most of the appointments. So I think going alone or with the GW Athletic staff, she was a little more self-conscious and then she's meeting with doctors who she did not know and they did not know her. So I think it was a combination of not being with me, not being with family, and not being with doctors that knew her. So those niceties, those warmup, that environment where people say, how are you, how's school?

Like that didn't exist anymore. It was more matter of fact. And that was a bit intimidating for her to speak in front of these athletic department people to doctors who she had no relationship with. And it was determined after those scans that she was physically fine and it was all her anxiety. I would assume that her anxiety. I would assume that having anxiety on your chart is just an easy go-to. If you can't find anything wrong, then it's just the anxiety. It's another 18, 19, 20-year-old young woman who's nervous about something. So I would assume that that is the natural go-to when they can't find anything else that's wrong.

And I don't think they really dig that deep to find anything that's wrong. It's just easy to blame everything on anxiety. So that's hard for a young woman. She goes into this system and she tells them she has these aches and pains and then they're all dismissed and they tell her it's all in her head, which I think that contributed to her not telling more in the future. So now the adults in the situation, the team believe that it is strictly a psychogenic psychiatric problem that's prohibiting her from participating.

Does she end up playing with the team? So, spring of freshman year, she played and she did okay. We went out a few times and she was just not running as carefree as she did when she was younger. We thought maybe it was just women's bodies are different than girls' bodies and didn't quite know what was happening. Maybe it was orthopedic pain.

Maybe it was hormones. We didn't know. She was telling me her calves hurt. She was telling me she had headaches. But these doctors couldn't find anything wrong. She spoke up and they did the basics and they deemed her fine. So in her mind, she probably did think

it was all in her head, but she played. And then the summer was uneventful. The fall once again, it was, you know, new girls come onto the team, other girls graduate and it's time to do your testing again. And she was like, Whoa, I'm not doing that. I am not doing that. Her calves were really, really hurting her. They were turned bright red. So this is when they started to do some testing on her calves

for compartment syndrome. So as an orthopedic surgeon, I'm actually very qualified to speak about this. And our listeners have never heard about this, but compartment syndrome or more specific exercise induced compartment syndrome or exertional compartment syndrome, all of your muscles in your body are in a casing like sausage. And that casing does not expand. And in some cases, you may hear of people

who have done CrossFit or some super intense bout of exercise and the muscle swell inside of those casings. And it's too much pressure that it starts to cut off the circulation to the muscle. And that can cause the muscle to die. And so, compartment syndrome, full-fledged compartment syndrome, if you are in a trauma and you break your leg and it expands to a huge side because of bleeding is one thing. But exercise-induced compartment syndrome usually presents a little differently because it's kind of like low-level syndrome.

So it doesn't present with a rock-hard calf and no blood flow. It's more subtle symptoms. So I'm not surprised that they were curious or wanted to test her for that. Yeah. So they tested her for that. I did go down for that appointment. Again, I'm in this different medical system. We're at GW now and literally the doctor came in for five minutes. I don't even know what she said. She was like in and out and she recommended surgery. And she said we can't really find anything wrong. But because we don't know what to do. This was in essence the conversation we recommend having

surgery without measuring the compartments with the needle. Maybe they did. I don't know. You would know because that test is very invasive. It's a needle about this long and it's painful. You have to stick it in all of the different compartments in the cap. So I'm sure Rachel would have mentioned that if she had had the testing. That is a big leap to just do compartment releases. That is not a simple procedure.

Right. Okay. Thank you. I didn't feel good about any of it. And I wanted to bring her back to Baltimore where we knew people. I just, you know, everybody has an agenda. And though to GW, she may have been their number one recruit, but to me, she was my child and my daughter and she didn't have to play sports. And so I needed to bring her back to our people. And so I took her winter of 2016. I brought her back to people we knew in Baltimore who tested her, who said, we can't really

see a reason why she needs this surgery. So it was then over winter break of 2016 into 2017 that I said to Rachel I think you should just quit the team. I think that you can always get the surgery later but right now let's see if this is anxiety and let's just get rid of as much unnecessary stress as possible. And if you don't enjoy the team, just quit and let's see if your body starts to feel better. She did not want to quit. She really loved to play, but obviously wasn't feeling well. So she did choose to quit. And that was a really big move for her after sports had given her so much confidence throughout the years.

That was big. And I'm sure part of her identity. So then in the spring of 2017, she was at GW. She was doing well academically. Her anxiety was reduced. She was not complaining about symptoms. And she told us that she wanted to transfer schools, that part of being at GW was the team. She always loved the girls and the team and without the team, she just wanted a fresh start. So she applied to Tulane and she got in and she was excited and we were excited for her and all was good until the summer of 2017.

So about a week before she was scheduled to go, I took her shopping to prepare for a different climate and the start of something new and it was really hot in August of 2017 and I noticed that she could hardly walk and even though it was hot and I was hot, I knew that that was not okay. So I was worried about her going to Tulane and being a thousand miles away, again in a medical system where I didn't know anyone. And so on the way home, I called my friend who was a doctor

and I said, can you fit Rachel in And so on the way home, I called my friend who was a doctor and I said, can you fit Rachel in because someone needs to see her? And so this is gonna get hard, okay? So the next day, August the 10th, 2017, my friend Nancy said, bring Rachel in. I'll see her on my lunch break. I was like, okay.

So Rachel went in and Nancy took a lot of extra time with Rachel and really couldn't find anything physically wrong. But as Nancy has told us, Nancy looked in Rachel's eyes and knew that Rachel thought something was wrong. And Nancy was, she said she was this close to blaming it on anxiety.

Another 20 year old young woman, nervous about boys or social life or TikTok, you know, Nancy almost thought that was it. But Nancy looked in her eyes and took a few extra minutes to ask Rachel questions and chose to order labs for that afternoon. I took Rachel down to get labs and her liver numbers came back really high. Nancy being an excellent practitioner and a good friend ordered an ultrasound. My husband, I took off to pick up my

kids from camp, not knowing what was going to go down that day. Wayne took Rachel for an ultrasound at 7 a.m. and by 8 a.m. I guess they were all calling Rachel on her cell phone. So again, at this point, she's 20 years old. HIPAA says that they're going to speak to the patient and not to the parents. Rachel wasn't answering. I guess she had gone back to sleep or something after the ultrasound. And so I got a call saying we need to talk to Rachel. Where is she? They said we need her to come right in for an MRI.

At this point, my husband took her in for an MRI. I'm still on the road and she had the MRI. And then another friend of ours met with Rachel and my husband in his office. And this was a friend that we've known a long time. And his daughter was friends with Rachel. And he started to cry. And he said that they had found a 20 centimeter mass on her liver and that they needed to do a biopsy right away. At this point, I'm racing down the highway.

I drop my kids off and I just ran to the hospital. I was running through the halls. Rachel was getting a biopsy. I didn't, it's a blur. We were in shock. And the next morning it came back that she had a pediatric liver cancer, fibrolemelor hepatocellular carcinoma.

And that was Saturday morning. They called us at home. These again, were our friends. These doctors were our friends and it was bad. It was tough. We just take a break a moment. I mean, number one, we talk about North star believers and for Nancy to really look at her as a whole person and just know, even though she couldn't

find that smoking gun, she just knew that something was wrong. And I will tell you, that is not a normal lab to get a liver panel. A normal lab panel would have been a Chem 7 and a CBC, maybe a urinalysis to make sure you don't have a UTI. So she really was trying to use all her spidey senses, almost like grass-fed straws, to figure out what, almost asking for permission to continue the studies, to have someone believe her, believe you, and really do whatever it took to get those answers for you. Yes, and these were people we knew and, God, for people who don't have

connections, the medical system is so broken. It's so broken. But thank God for these people who got Rachel in right away and cried with us, cried with us. I mean, just that visual of you running through the hospital. I know every parent listening, it's something you never imagined yourself being in that position, but you're just, your instinct takes over and you have to get to your child as soon as humanly possible. Yes. When she got this diagnosis, did you

think back to her getting that original diagnosis of anxiety? Oh, I thought about it a lot. And I, even to this day, sometimes think about, wow, if I had access to her portal, I wonder what I would have discovered, what was ignored. Did they see something and just ignore it? I thought about it a lot. I still think about it a lot, but I tell myself that I don't think it would be healthy for me to look and find something and what good would that do except make me angrier? As a mom, when doctors are crying and you're given a terminal diagnosis,

for me, I didn't think about it at all. It just, my mama bear instinct kicked in and I was going to do anything to save my daughter's life. I was going to do anything to save my daughter's life. So we all, as a team, worked on this all weekend. The key now was, could we find a surgeon? Could we even find someone to do this? And so we worked with these doctors to find a surgeon all day Saturday, all day Sunday.

I could barely move. We were distraught. Rachel was not feeling well, but did not know the depth of the situation. And we finally found a surgeon. We met with him on Sunday. He came in to talk to us. We knew this was life or death at this point. So he wanted to do the surgery right away.

It's now Monday. He had scheduled the surgery for Wednesday, August the 16th, but in the pre-op, you know, they do scans and labs and everything. They had found spots on her lungs. So once again, this was not good. I didn't understand all the language at this point. And one of the doctors, he broke down again

and he said, this is not good. Oh my God, she's stage four. And I think he was distraught because again, we were friends with his kids and it was hard for the whole team. But at this point, the focus was to try to do something about this 20 centimeter tumor in her liver.

And as bad as the spots were in her lungs, we had to triage at this point. Like let's focus on the liver and if she makes it through that surgery, then we will focus on the liver. And if she makes it through that surgery, then we will focus on the lungs. You bring up a very interesting point that we talk about a lot on the show, which is the issues with communication and how as physicians, we have a completely different language. That's what we learn in medical school.

We spend four years in essence, learning another language for how we really communicate with one another. But part of our job is to be the interpreter of that language for our patients. There is a fine line in interpreting that information to present that information in a way that is both informative, but palatable to our patients. And that's kind of a judgment call about how you describe things. But to call something spots when that is a metastasis, if there is spots or abnormal tissue outside of the original organ where the cancer started from. That is a completely different conversation

according to stage. That's supposed to guide the conversation around the treatment. Well, what are we talking about? We're talking about a lesion that's limited to one spot. So I think we can do a limited resection versus we're now at stage four. And now we have to talk about how that changes things. So I know that this must've been a real whirlwind for you.

And unfortunately, when you're dealing with cancer, you are up against time. And so you don't necessarily have the luxury to gather all the second opinions and read all the studies and talk to all the people. So I understand that this was probably just an extremely stressful time. Yes. Yes. The phrase I often use is that we were trying to learn how to swim while we were drowning. We were up against time, life or death decisions, and we did the best that we could. That's all we could do. But she was scheduled for surgery on Wednesday, August 16th. She went in for surgery, and this is where I know that doctor took a risk by doing the surgery on her. I know that, and I thank him for that. And the surgery went well. He know that and I thank him for that and the surgery

went well. He came out and he said those words that everyone wants to hear but that haunt me which is we got it all. No treatment needed. We got it all. Good news. You can go to Tulane. Go back to your old life. We're going to scan you every three months. And that's it. I see your face. No, knowing that there was already metastatic disease. He said that the tumor lifted out like a baby. It was 10 pounds, which was going down the right side of her liver. It was her whole right lobe, which of course was affecting her calves. Again, hindsight, we know that right shoulder pain is tied to

the liver. So two years before Rachel was communicating these symptoms, but there was no Nancy. There was no one searching and it was convenient to blame it on anxiety. So that's what happened. So this surgeon who I am grateful took a risk on her said, I got it all. Good news. You can heal now. Go have a fun time at Tulane. There were some complications with the healing. She had some infections. She had to go on IV antibiotics. We told her that she could not go to Tulane that semester. I was terrified to take her out of Baltimore. And she was depressed and she stayed home with us, but she was looking forward to going to Tulane in the spring. I know as a doctor what you're thinking. And in November, months later, she had her first set of scans and they did CT scans

and said she was stable. All looked okay. Except when I looked in the portal and I looked at the reports, the radiologist had noted a lot more spots on the lungs. And I remember calling the doctor and go, wait a minute, you just told us we were physically present and you told us that she was okay, but this report does not say that. And we fired him. So just to say, I'm a lawyer by education. I had to use, this was my biggest project to date was learning advocacy skills in a broken medical system. Again, I don't think that the doctors are intentionally, but time was of the essence and we lost valuable time.

People may not understand what your care team looks like when you're diagnosed with cancer. So most of the times you have either a mass or positive lab findings, right? You may have a blood cancer, you may have positive lab findings. You need a biopsy to confirm what is the type of cancer that it is. And then you will need to either work with an oncologic surgeon who is going to physically remove that mass, in addition to working with an oncologist who is primarily in charge of the chemotherapy and the radiation and is kind of like the quarterback of the team.

Who was your team? Yes. So the surgeon had done his job. He had completed a successful surgery. And so at this point, we were under the care of a referred oncologist who had ordered her November scans, T scans, that's important, I'm going to revisit that in a minute, and had deemed her stable, which went against what I saw on the radiology report.

So it was the oncologist who said she was stable, not the surgeon who said, which to me is even more shocking. Correct. Correct. I could kind of see possibly from the surgeon's point of view, but from the oncologist's point of view, that seems unusual. No treatment was recommended at this point. The surgery had been done in August.

It's now the end of November. You're right. She had metastasis and there was no treatment recommended or offered. It was just wait and see. That's what was said to us. They told us she was fine. I did not feel good about this at all. Rachel was starting to get really angry with me. She was depressed already about being home and all of a sudden I was the bad guy because we wanted to believe the doctors. And so then I became the naysayer and she said, Mom what do you know? You're not a doctor. And I wasn't

but a mother's intuition. You just, you just know. You just know. And so she was going to Tulane in January of 2018, and I decided to make an appointment at MD Anderson. Rachel was now at Tulane, so she flew to Houston, we flew to Houston and met her there. And it was a huge organization. I was now researching pretty heavily. Rachel often didn't want to rock the boat, but when it came to my child, I rocked many boats. And I always used to tell doctors, I said, I have one patient. She is

my one and only patient. And I am not afraid to be a squeaky wheel because all I care about is her and I know you're busy and I mean no disrespect but she's my life and so I was now dedicating eight to ten hours a day on this and I would stop at nothing for her and I had found a doctor at MD Anderson who had treated other fibrolemelor patients, set up an appointment with him, and he scheduled a battery of scans for her. When we gave him the disc regarding the CT scans, he said, these are the wrong scans. He said, you never do a CT on the liver,

on this particular cancer, you always do an MRI with contrast. He said, these are basically useless. How did that make you feel to hear that? Terrible. Now we've lost basically almost six months of time. Known metastasis, six months of time. But anyway, we got the right scans and they found additional tumors in her liver. And now they were discussing chemotherapy. She was obviously very upset. As a 21 year old at a new college,

she did not want to be on chemotherapy. I will say at the same time, I had been researching and researching and I wanted to focus on success stories. I knew that they were just gonna probably give her maybe 18 months to two years to live and they were gonna just try to stabilize her and I was desperately looking for some positive news and I had found a patient that was actually doing

well and the reason they were doing well it what this father was amazing he was a scientist and at this point immunotherapy was just becoming popular. And this father did exactly what I was doing, knew the chemotherapy that was going to be recommended, knew that it was not a long-term solution. And he decided to self-fund and add immunotherapy to the mix for his son. His son was stable.

I wanted it to. So I had found this protocol. The doctor at MD Anderson wanted Rachel to start part of that protocol, which was already accepted in the United States. And the doctor wanted her to start right away. And Rachel decided she didn't want to start till after her first Mardi Gras. She said, I don't care what he says, I'm not doing it.

Now, it wasn't said that politely. I had sort of hoped Rachel would come back to Baltimore so that we could like wrap our arms around all this. But she, my shy girl, decided she was staying at Tulane. She was not going to start right away. And so now all of a sudden I had to coordinate all of that. And I found a oncologist in New Orleans who was willing to work with MD Anderson to give Rachel this chemotherapy

Combination that took a lot of work on our part. Of course, he wanted her to start right away She said no Marty girls coming up I'm not doing it, but she did start the day after Marty girl in 2018 in mid February it was was one week on, one week off. She had to have a fanny pack with 5FU and interfere on shots. It was tough. And I was flying back and forth to New Orleans, but she was at Tulane.

She dropped her course schedule from full-time to part-time. And we started to focus on living with cancer. I started to find these stage four cancer survivors that were living with cancer. In the meantime, I needed to find someone who was willing to help us with this treatment. So I had to go back to my friends. So I had to go back to my friends. And so I spoke with one of our friends at University of Maryland. And I said, I think we should try this with her. I'd like to add this.

And he said, well, there's no statistics on it. And I said, but you don't have anything else. I know it might not work. What else are we gonna do? And if it worked on one person, maybe it could work on two. So he said, okay, I'll fight for you. And so Rachel became the first patient in the United States on that protocol.

And I absolutely know that that doctor went out on a limb for us because we had it covered by insurance. And I absolutely know that other kids could not get it covered. So, I mean, that, that's almost unheard of to have an off label use of a medication covered, which I can imagine was not cheap. Right. And, um, yes, I would have done anything for my child.

I was constantly trying to stay a step ahead of the cancer. I calculated that it took about 60 days for me from an idea to implementation. Well, I always wanted to be ahead of it. And during this running a business and being a mom to two other kids and having a 90 year old mother, and it was a lot, you know, life goes on and we did all those things. And then when the sun goes down and other people go to sleep, we get to work. We get to work. So in May of 2018, after being on this five, if you interfere on for three months, we brought her back at the end of

the semester for scans after having bad scans at the end of January, and she was deemed stable with minor shrinkage. So we're like, okay, at least we've stopped the growth. So now it's the fall of 2018 and she went back to Tulane. She continued on that treatment fall of 2018, spring of 2019. They said she was stable and she was living with cancer and not just living. I believe she was living well. She was at school. She had friends.

She was hiding her fanny pack. She was stable. Did her friends know that she had cancer? That's such a great question. Only her close friends and family. She did not want to be known as the cancer girl. She did not want people to know. I remember one time word got out.

One of her friends told someone who told someone who told someone, and she was livid. She wanted to control the narrative and I respected that. She said, it's my story to tell. I will determine what I say, who I say it to. And so though she was a shy child, she was a shy child, this diagnosis, the irony is she found her voice. She wanted to control the situation as much as possible. One of her biggest fears with the fanny pack was, you know, it made like a whirring sound, is that she would be in class and someone would hear. So she would wear, here was New Orleans, she would wear like multiple layers, anything so that people would not find out.

So. And I think that's also a relatable feeling, right? You're 21 years old, you're in college, you're trying to blend in with everybody and just live a normal life and have a college experience. So I respect her that she tried to, you know, as you say, you know, control the narrative, but it's also part of her probably defense mechanism

to try and move forward and live with it. Yes, it was hard because the doctors in adult oncology really weren't sympathetic to a young woman's feelings. And that was hard for her. What do you mean she wants to wait till Mardi Gras? What do you mean she cares? It was a lot of that. But she stood her ground.

It was challenging, but I respected her for it. When she was deemed stable in December of 2018, they then decided it was time to start picking off the tumors in a way. Okay, she's stable. So let's try to get rid of some of these tumors while we can. And so two weeks later in January, 2019, she had some cryoablation in the lung tumors on both sides. She did get a pneumothorax that was really painful and it was tough. It was tough. For people who don't know what a pneumothorax is, your lung cavity, your lung is actually

held to the lining and it's kind of like this jelly-like substance. And if air gets trapped, it creates this scenario where now the lung can no longer expand because it's being pushed up against this air pocket that doesn't belong inside your chest cavity. So typically you need a chest tube, I'm assuming. It was painful. Every breath you take is painful. Really painful. She was really unhappy. That was really hard. There was a lot of hard throughout all this that stands out to me as hard. She just wanted to get back to school.

She couldn't fly because of the pneumothorax. So we took a train from Chicago to New Orleans and we started to adopt the mentality of whatever it takes, whatever it takes, this is what we're gonna do. We're gonna keep living with cancer. So she went back to school. It's the spring of 2019. She's still on the treatment.

Scans in March of 2019 were okay. June of 2019, the end of the semester, she came back to Chicago for scans. Because again, it was every three months, the stress of this every three months, we never made any plans. Everything was refundable. The expense, the flights, the hotels, the Airbnbs, the rental cars, this is what you do. Again, something that gets totally lost in the shuffle because obviously there are more important, feel like more important heavy things to talk about, but yes, absolutely the costs involved

in just supporting someone going through cancer. And most of that is not an insurance covered expense. Right, none of it. I mean, we have a small business in Baltimore. We had some control over our schedule, but it was still incredibly difficult, including, you know, we have two other children and that impact was huge.

We were doing the best that we could. And just think about getting insurance approvals for all these different hospitals, all these different doctors. Everything was a challenge and all these different procedures. And often they were rejected the first time because when insurance companies saw that she was terminal, they didn't want to spend the money on these procedures. And we had to do peer to peers and we had to do all those things pretty much every single time.

But we had this pediatric oncologist who was willing to fight for these kids. And through all of this, I'm raised believing in the doctors and the medical system, but there continues to be like fractures that we're seeing in the system. And it's scary to see. So it's a broken system. There are good people, but the system is broken. We had to fight for absolutely everything. And we never, ever used military terms.

This is something personal to us. We never fought the cancer. We never viewed it as a battle. And Rachel was not a warrior. And you don't lose. How depressing is that? That language to think that you have to fight harder. We never ever used that language.

We had to fight the medical system. We had to fight insurance. We had to fight for these off-label pharmaceuticals. That was where our advocacy went. That was challenging. It's now the summer of 2019, and in October of 2019, she told me, so at this point, remember, she had kept her cancer secret, except family and friends, but at this point, she's 22, 23.

It's a big difference between a 20-year-old and a 23-year-old. And she tells me that she's going to tell her story. She feels like she's now ready to tell her story. And that was a huge moment for Rachel. Rachel very much had, again, we had been studying alternative and integrative practices, and she very much believed that suppressed emotions, she needed to let it out. She needed to release her body from holding this secret that was really weighing on her. And my shy little girl told her story.

And I believe that is when Rachel really found her voice. I think she took the idea that if she was going to go through this pretty terrible experience, that maybe it could help someone. And then COVID hit, March of 2020. Now they're still working on her cells at the University of Maryland, but everything slowed down during COVID. So research really slowed down. Fortunately, she was stable, but she was stuck at home with us.

She wasn't as depressed because frankly, everybody was stuck at home. So it didn't seem as terrible. And she had a purpose. She was starting to post on social media. And that is probably where most people started to get to know her, is at this point. And in March of 2021, vaccines were just coming out. We went down for scans and she had more growth. It was slow.

It was not impacting her energy yet, but it was impacting her psyche tremendously to be on chemotherapy nonstop. And yet it's still growing. So it was at this point, again, it's still COVID, and we decided to pick up and move her to LA. Rachel said, I always wanted to live there. And I turned to my husband and I said, I'm taking her to LA.

We didn't know how long she had to live. And we knew that hope mattered. And so I took her to LA and we arranged for her to have a new team now at Providence in Santa Monica. So a new team, more insurance, and she was on treatment the summer of 2021. She was at the beach, she had sunshine, she hit the ground running. And it was really beautiful. Though the cancer continued to progress, Rachel was happier and her mood was lifted.

And at this point, I mean, that really mattered. It really mattered. What you said, I think a lot of people would dismiss, like, oh, yeah, so you moved to LA and she had fun with her friends and she was able to go to the beach. Sometimes it really is more about the fighting spirit and the will to keep going on.

And if you are just depressed sitting at home where your entire life revolves around your doctor's appointments and the next scans, that is not living. It's not living when you're 23 and 24. It's not living. Now, not everyone has that opportunity to do something like she has in this incredible support

that she had from you in the financial wherewithal. But I think talking about it in larger terms, in terms of like, what can we do to help her as a person? Obviously the medication we are trying to keep her alive, but what else can we be doing to support her? And by surrounding her with her friends, by giving her different creative outlets and opportunities and new

experiences so that she can feel like she has accomplished something, that she is having an impact on the world, that she's contributing, I think probably had just as much to do with helping to keep her alive all this time than the actual chemotherapy. Thank you for saying that. I agree 100%. From the girl who was depressed sitting on our sofa in Baltimore to what three months later she felt so much better despite the cancer. And the goal at this point was to live with cancer, however Rachel defined that to be. She also, when we got there, I was always trying to stay a step ahead.

There was more practitioners to meet, more integrative approaches. The science is coming in quickly. You try to stay ahead of it. It's overwhelming. I literally had a room in my house. I called it the war room. I had whiteboards.

I had a room in my house. I called it the war room. I had whiteboards. I had papers. We were consulting now with Germany, Mexico, Thailand, the UK, you name it. We didn't care where the ideas came from. We've researched all of them. We did not have the luxury of saying no to anything. And it was still growing. All options on the table at this point.

So she moved to LA in the fall of 2021, the liver tumors, there was more. And she went to UCLA and did four cryoablation procedures, but her body was starting to get tired. And so she was angry. She was living with cancer and it looked good on social media, but she was getting angry. In February of 2022, she had scans and all of a sudden it had spread a bit outside of the lungs.

Decisions had to be made. The Providence doctor really didn't know what to do. He didn't know what to do. We were starting to scratch our heads what to do. And we had found out about intratumoral immunotherapy that was being offered in Mexico. Rachel did not want to go. She did not want to leave her friends.

There was other opportunities in Germany. She did not want to go. I didn't blame her. She didn't want to go. I didn't blame her. She didn't want to go because the problem with going is you never knew if you had a complication when you were going to come back, if you were going to come back. So Rachel just didn't, she didn't want to leave. That was okay. So at the end of 2022 and early 2023, she had a job, she had a boyfriend, she had lots of friends, she was on treatment every two weeks, and she was considered stable.

And we were using Signetera at this point, as Signetera went way down, but she was very unhappy. And the day before, every infusion was a lot of anger and phone calls home and she was miserable and she felt poorly and she was tired. She was tired of all of it. She was tired of changing up her protocol and feeling nauseous and constipated. She was tired. And it was getting a bit frustrating, I think, to work with her. And on the one hand, it was frustrating for the doctors and for the family.

But on the other hand, we did admire her because she had found her voice and she was choosing to make decisions that none of us walked in her shoes. You know, it's so easy to say, you should do this, you should do that. We weren't doing that. So it's tough, but I admired her. I just want to quickly interject because I think when a lot of people think about cancer

and cancer treatment, they think you get the diagnosis, you have the surgery, you're on chemotherapy for six months and then that's it. Right? Rachel has been on chemotherapy for how many years now? Six years. Six years. Six years.

Okay. And what you don't appreciate is how tiring it can be. And even though it's a love-hate relationship, or you understand these drugs are keeping you alive, but you don't wanna leave the party with your friends because you have to come home and do a three hour infusion. It gets exhausting. And that is a part about cancer treatment that also is not discussed enough.

And how it affects your relationships and just all of that. A young woman was hard, it was hard. And so she was starting to not follow the doctor from Florida. She was tired and despite the lowering signotera, despite all of that, she wanted to stop. And it was really at that point that I,

she was an adult at this point. And she was having, I remember her boyfriend called me in June of 2023 at this point. And it was the first time he ever called me. And he said, Rachel really doesn't feel good after her last treatment. Can you come out here? And I was scared. And I got on the flight and I flew out there and I did not know what to expect. And she just was emotionally and physically exhausted. And she said she wanted to stop. And we didn't know if it was going to be a permanent stop or a temporary stop,

but at this point she wanted to stop. I could fight with her, but for what? It's not as if medicine said, if you take this for six months, it's guaranteed and you'll feel better. Nothing like that was offered. And it was now six years in. So that summer, much to the dismay of her doctors, Rachel got on a flight and she traveled. Something she had not been able to do. And when her doctors called me and

they said she missed her appointment, where is she? And she's not calling us back. I said, oh, she's out of the country. She's, she's gone. And when she came back, you know, she had some infections and some things and she didn't feel good. And it was now August of 2023. And a lot of this was sort of weaving a web. We were always trying to stay ahead. And so I found a doctor in Brooklyn that worked with all the toughest cases. And Rachel had a lot of friends in New York and we sort of convinced her, time to leave LA, come to New York, let's work with this doctor.

And we told him that you have to woo her. I think a lot of doctors are used to patients who nod their heads. This was not that type of patient. I said, you have to woo her and earn her trust and we're begging you to help us. And he did, a very kind person. And he worked with her and Rachel felt a spark of hope

in the fall of 2023 when she first moved to New York. It was new and exciting and she had different friends here and it was closer to home, but she was starting to not feel well. And in November of 2023, she had scans up in New York and more growth. And so he wanted to change up the protocol. He wasn't giving up.

What I appreciated about him is that he never ever gave up. In February of 2024, she happened to be home, thank God. Coincidentally, when on a Monday morning, she started coughing up blood. And that was really, really scary. And so I called my friend at the University of Maryland and he said, bring her right down. And I said to him, can we go to one of these suburban hospitals? And he said, absolutely not.

You need to bring her right to shock trauma. And one of the advantages to working in a high homicide city like Baltimore is that we have a facility like shock trauma. So we drove her right down there and they whisked her right in. And there was a battery of tests. And it was pretty terrifying because she had not had scans at Maryland for quite a while. And when they saw the scans, every doctor that came in was, it was bad news. It was really bad news. And I think Rachel was really, we all were knowing that this was a tough time. They wanted to find the source of the bleed.

So on the next day, they wanted to do a bronchoscopy. And I remember the resident coming in and they went through all the risks. And as you know, when you go through all the risks, it's all terrifying. And she signed the consent form. But of course they said, none of those risks are really going to happen. Don't worry about that. Well, I can tell you that every risk they said was not going to happen happened. Every single one. And she literally bled out on the table and they had to call in special teams and embolisms and you know all this. And she made it.

But she was seconds away from not getting off that table. And I called her sister in, her sister got on a flight from college and I called her brother in, he got on a train and we did not know if Rachel would make it through the night. And when she was rolled out and she was intubated and her eyes were taped shut and her wrists were tied down,

that was not my daughter. That was not their sister. And that was just terrifying. And I stayed with her. I never left her. And that Wednesday, she was intubated, and Thursday, and Friday, and she woke up. And the first thing she said, she said,

why did you let me live? I wish I were dead. And I said, I didn't do anything, Rach. I guess God decided you weren't done here yet. I should say in the meantime, remember the cell therapy that they had taken her cells in 2018. It had been slowed down during COVID. The cells were at Maryland. Now, she was at Maryland.

Though the doctor who had started that was no longer at Maryland, he had taken the cells to St. Jude. You can read about Rachel cells there. It's all online. They were now moving it cells to St. Jude. You can read about Rachel's cells there. It's all online. They were now moving it back to Maryland. Maryland was putting in the finances and the research and the time for their Maryland resident, Rachel Yaffe. So those doctors at Maryland were now back in the mixed while Rachel was at shock trauma.

And they realized they really needed to get a move on this right away. But the Sunday morning of Superbowl, Superbowl started at like, I don't know, six o'clock, four o'clock or something. Taylor Swift was going to be there. And Rachel said, I thought I'd get out of here. It's so depressing. I don't want to be here anymore. And her doctor who was very kind, but had no idea what he was up against, said, Rachel, you can't go home. She called him on his cell phone and she said, you can't go home. You just were intubated. And she said, I want

to go home. I cannot heal here in this environment. And he said, no. And he started to talk nicely to her. You can't go home. And she hung up on him. And she called another doctor and she said, I want to go home. It was like 10 o'clock now in the morning. And he said, Oh, I hear you, Rachel. And I'd love to get you home, but I'm no longer there. I can't sign you out. She hung up on him. So then she calls the next doctor and she said, I really want to go home for Superbowl.

It's so depressing here. And he said, I happened to be on the floor doing rounds. I'll be right over. And I'm thinking, oh my God, she's going to convince him to go home. And we are so unprepared. And sure enough, she says, I cannot heal here. It's so depressing. I want to eat my food.

I want to be with my dog. And he said, okay. And so two days after the tube came out, Rachel got in the car. There is a TikTok about this. And to the song of breaking free, she went home and watched Superbowl and looked for Taylor Swift. And that was Rachel's breakout story. I do believe Rachel had a near-death experience. I do believe that

she was not meant to get off that table and she went on to have a couple beautiful experiences. Number one, she was able to attend her sister's graduation in Madison, Wisconsin, which was a gift. The second thing is she decided to rent an apartment in New York, which made no sense, but it brought her hope. And the third is that she had a Romeo and Juliet romance for about six weeks. And I will forever be grateful for that young man who made Rachel feel beautiful and lovable and special at a time where she felt none of those. And that was all bonus. When she got off the table in February 2024, that was a miracle. That was a miracle. And I think just realizing that, you just realize that you're just not in control.

For seven years, I tried to control the uncontrollable. I really did. But at the end of the day, for all of us, whether you have a terminal diagnosis or not, none of us are getting out of here alive. And there are things beyond our control. So we control what we can, and then we have to accept what we can't. And at this point, I was now mom, and I'd sort of turned it over to God, because literally

when she got up off that table, I knew that this was out of my hands. There was not a whole lot more I could do. And University of Maryland was moving swiftly towards this N of 1 cell therapy that they were working on. They sped it up. We know that we had bought some time, but not a lot of time. And it was at that point that the cell therapy, they decided to go for it. I had mixed feelings. And I want to go back and say, and I know this goes back a long way, that when Rachel was diagnosed, the only way I could get up out of bed every day was to tell myself that there must be

a bigger picture to this. It made no logical sense that my beautiful daughter would have to manage all of this. There had to be a bigger story. So I very much embraced my spirituality and so did Rachel. There must be a bigger purpose. And so when all this was happening, we leaned in pretty heavily and talked about death,

which in our society, people don't talk about and doctors keep quote fighting. But I didn't really agree with that. Sometimes you stop fighting. I wanted to ask if there was any point, and perhaps now this is the point where anyone brought up the term hospice to you and what hospice does because I'm waiting this whole time for someone to tell me that they talk to you about hospice and for people who don't know what hospice is it's more about a mindset shift between the quantity of life left and the quality of life left.

And when you are in a situation where, as you said, you have exhausted everything, you've exhausted all the options, and now you are really just dealing with the consequences of an unstoppable disease process, and it is not a if but when scenario, that there are people and treatments that the whole point is to make your life as comfortable and meaningful and valuable as possible as you can towards the end of your life. And that just because she was 25 years old did not mean that she was not eligible for Prosmos. Right? Well, there was a bit of a conflict.

And again, as appreciative as I was for many things, there was a bit of a dark side. The money, the time that Maryland had put into this cell therapy, they wanted to try it. And we very much felt that. I was looking into death with dignity in Vermont and Oregon. I mean, I was ready. I wanted dignity.

And on the other hand, hope matters. And if this cell treatment could work, then why not try it? So there is, I want to say hindsight is 20-20. There is no right and wrong. Who knows? Who knows? And for six of the seven years, Rachel really lived with cancer. But we were now at the point of Hail Mary, and maybe the cell treatment would work.

In order to get the cell treatment, it was like a T-cell transplant, but for solid tumor, which they had success on CAR T, but this was totally different. In order to even try this, just preparing for the treatment was brutal. Trying to keep her alive in order to try it was terrible. And she went into the hospital on October 10th

for this experimental treatment that they had worked six years on. And there was a lot of fanfare. There was a lot of cheering because the whole research department was excited. And within 18 hours she was gone. It was too much for her body. And we woke up on Friday morning, October 11th,

and she said, mom, I don't feel good. I'm really, really anxious. And I said to her, my brother had died the year before, suddenly. And I said, Rach, do you see Uncle Philip? She said, I don't know. I said, if you see him, you can go to him. It's OK.

She said, Mom, I'm scared. And then stuff happened so fast. And my husband raced down. And we just didn't know what was going on and her blood pressure was dropping and I didn't understand what was happening. And they were starting to do chest compressions and it was horrible and I was screaming, screaming. I was screaming and I told them to all leave. I didn't say it that politely.

I said, get the fuck out of here. Just leave us alone. And I told them to all leave. I didn't say it that politely. I said, get the fuck out of here. Just leave us alone. And we held Rachel and I know she heard us and she was gone. And that was, I believe that she chose to exit. I believe she was meant to leave us in February. And I believe that she knew this was not going to work and that we would have

been stuck in the hospital for days, weeks, months, who knows. She never wanted to live like that ever. And I believe that when she saw an opportunity to exit, she took it. And that was a really hard day. The reason I wanted to do this, I can never ever bring my daughter back. Ever. But as I follow Rabbi Steve Leder from LA, who's amazing, and he says, you can only truly learn from pain and suffering. And he says, is the pain and suffering worth the lessons that we learn? No. But is it worthless?

No. And so I feel it is my, I don't want to say responsibility or legacy because I don't have to do any of this, but if I can share Rachel's story, if I can help one person, then that's what we're going to do. And Rachel really viewed her diagnosis as the impetus to speak up that she had to get the word out, that life was short. She had to really impress upon people joy and dancing and how time is of the essence. And she used to say, don't take life so seriously. One of her sayings was it's not that deep.

And she would say, mom, they're all so serious. Don't they understand that it's just not that deep? And for me, Rachel and I went on a journey together, which leads me to the advocacy. I think that she had to learn how to advocate for herself. She had to find her voice. She had to be confident. In the beginning, it was me, me doing the advocacy for her. I modeled it and then she became her own advocate. And as difficult as it was, of course, to sometimes she made decisions I disagreed with, I also was just incredibly proud of her. Even if sometimes I was the recipient of that anger. I was like, Whoa, look at her. This is not the same child.

Cancer gave her a voice. It gave her a purpose. And I talk to young women all the time. And I tell them to keep a special journal so that they can track trends of when you feel bloated, when you feel constipated, when your stomach hurts, where your aches and pains are, when you go into the, when you feel constipated, when your stomach hurts, where your aches and pains are. When you go into the system, you really need to have your facts and data.

You need to be able to provide information. Give the doctors information that they can use to help you. But if you go in and you say, yeah, I kind of don't feel good, but I don't know what it is. And I mean, they're going to probably dismiss you. It's a combination of advocacy skills. And when you track trends, it will give you confidence to speak intelligently. And I'm going to continue to follow the path of all of those things that Rachel would do if she were here.

And I will continue to share them with as many people as will listen, because maybe someone can be helped because of this story. Well, Linda, that was so powerful and so beautiful and really just what vulnerability to let us into what that was like on probably the most traumatic hour of your life. And I think that day in isolation doesn't do justice to the whole six year journey that got you to that point. to the whole six-year journey that got you to that point.

And so I really thank you so much for sharing this story in its totality. I'm sure you have recounted many pieces along the way, but we're really honored that you chose to come on to the Medical Detectives to share this story of her life, which is her legacy, right? Her existence is her legacy. She has touched millions of people on social media. If you are on TikTok, I think it's Rachel Yaffe, right? That is her screen name on, on TikTok or.

Or Rachel K Yaffe. It's on TikTok. It's on Instagram. Yeah. And, you know, I actually was the one who asked Molly, our producer, to find you because I just thought that this story needed to be told in the format that this allows. You know, obviously I'm a big user of TikTok and Instagram, but you're not able to get that kind of full picture and also to be able to get it from her loved one's perspective, right?

Unfortunately, she's no longer with us to be able to share her story and tell us what it was like to go through all those treatments and be a 22 year old dating with a chemo port. But I really, really, again, can't thank you enough for opening up and sharing both Rachel's journey and your own journey, which to me sounds like is still a continuing story. Wow, that was really heavy.

I don't know if you can see, well, you can't see because this is a podcast, but all of my mascara is running and my eyes are burning because I think it has sunscreen in it. To me, the biggest learning from this is unfortunately, and this is a broken record, the problem of young women being misdiagnosed and being told that they have anxiety and blaming their anxiety for their physical symptoms. And what is happening is that these psychiatric diagnoses, unfortunately putting blinders on physicians and they don't continue to question and they don't continue to order the tests. And we talked about having that

North Star believer. And for Rachel, it was her family friend, Nancy, who went above and beyond and was able to eventually solve her medical mystery. But this is just a call out to anyone who's listening, who's young, who's female. If you're a mom who has daughters who are young and female, that we need to take care of ourselves. And that includes when we are in the doctor's office. And unfortunately, sometimes self-advocacy involves standing up for ourselves, demanding things. You are not a difficult patient. for ourselves demanding things. You are not a difficult patient. You are getting what you need and it comes to our health. It's all that matters. So this story was just absolutely incredible to

hear from Linda's perspective. I mean, obviously that end of life conversation that she had with Rachel was absolutely heartbreaking, but I think it talks about the relationships that we have with our parents, our siblings, our friends, and that even in this is the hardest of stories to hear, I think Linda still had peace in the end and she has turned that into her life's work now of getting Rachel's story out there. And as we always say, if it just helps one person, then it's all worth it.

So thank you for listening and we'll see you next week.