Rachel's Cancer Journey - You Can Sit With Us Ep. 35

ramble [Music] thank you to native deodorant huzzah mason and better help for sponsoring this episode good morning everybody uh welcome to you can sit with us all you cutie booties out there we're live we're live we are live in studio it feels so real it feels so wonderful i'm so happy to see you guys i know yeah we're missing becky today um but she'll be back um today we are actually filming this filming recording this on international women's day yeah it's a very special day yeah as international women you know we're very local women this year but i would love to be international i i truly wish we were international women but we thought what better day to share a a a very very special um an intimate story that um we have been wanting to share for a while um rachel's cancer story yeah i mean this is this is something that you've hinted at a little bit i i have heard parts of the story um i think maggie's heard parts of the story as well just being friends with you yeah i think it's a pretty important part of your life and um we are so excited to to to hear about it and to share it with you yeah to share it with the people to share the people the people well let me start let me paint a picture um well how it's all started was as i was at a friend's house in upstate new york you know how in your mid-20s you just go to your friend's parents houses yeah absolutely so my friend's parents had a very nice house with a pool in upstate new york and i just sort of rolled over and i felt under my arm a lump in my breast and i just kind of like was like huh is that what i think it is uh-huh no did it did it hurt did it uh-uh it was but it was very clear it was it was like i felt it with my arm i had my boyfriend feel it and i just like but it was saturday and we were in upstate new york and everyone was partying and i was just like okay well we'll deal with this later we'll deal with it the next day yeah i actually did this very funny thing which was the next day was sunday and we were still there and everyone's like playing beer pong in the backyard or whatever and i went to the pool and i laid on a float and i like looked up at the trees in hudson new york and i thought like is this the before and after of my life like it was like i was in my own movie like my own indie movie wow like the drone pans out the little wes anderson float in the pool and i was like listening to the other like all of our friends like because i didn't tell anyone but my boyfriend i was listening to like all of our friends like having a good time i was like is this it like i just had like a dramatic moment turns out it was it but i i thought i was just playing into it had you been like hammered into as like a young girl to give yourself like the self-breast exams and i never we learned how to do that in like middle schools yeah i said but i wasn't doing that yeah and also for all of you listeners out there i had very large breasts i know you wouldn't know that now but they were like huge i had huge boobs yeah they were really big i mean i wore like a 32 double d wow wow yeah bra i had big boobs that is actually my size wow and i i i don't consider them like you know huge but then when you when you actually think about like the bra they're pretty big and like i'm just pretty petite so they looked really big on me yeah um i i have only known you since after yeah and so i would never have guessed no never have guessed it that is so funny but you're gonna notice lumps less easily right because you have thicker tissue also at this point i'm 24. right so the tissue's really dense and young breasts um but no i wasn't checking myself yeah i mean i was like i also wasn't flossing every day you know you know yeah yeah yeah i hardly brushed my teeth every day i would go to bed drunk and like i'd be like i'll do it tomorrow i'll do it tomorrow i'm gonna brush my teeth tomorrow and and did you have any family history a little um but not directly i have an aunt who had uh breast cancer and also brain cancer who died really young a paternal ant um and i had some like colon cancers in older family members but it's not like my mom or my sister had it right so it's not something that like you were going to the doctor for and they're like have you been checking no yeah no and i barely had i didn't even have health insurance at this point because i had just stopped being being a nanny or i was actually still a nanny at this time okay and then i was about to start teaching school in august and this was just a few days before my birthday which is in july so i was sort of like transitioning mm-hmm um so i go back to the city and i don't know where to go because i'm uninsured i live in new york city um i don't have insurance i'm a nanny and i'm about to be a teacher um and so i go to planned parenthood um and i actually saw a woman there who was uh she went to the same college i went to um and we were chit chatting and she was like oh it's a i'm not gonna say it right a fibroadenorma she's like it's a fibrous lump it should go away with your next period they say that a lot of the times like when young girls are mom i feel something they usually say it's just like regular tissue or like development like that did you think was that the first thing that came to your mind when you no i was my friend oh my god it's cancer yeah that's what i thought but i was like holding that thought at bay yeah you know how in like scary situations you're like okay well it could be that or it could be a whole host of [ __ ] that i don't know about that's like a lot less scary right right like here i am at you know at my friend's house i'm 24 right now yeah yeah have you ever thought about switching up your deodorant game consider making the switch to native native cares about what you put on your armpits that's why their deodorants ingredient list includes things you've actually heard of like coconut oil and shea butter none of their products are tested on animals and almost everything is vegan switching to native from an antiperspirant doesn't mean you'll have to worry about that midday bo either native will have you walking around smelling like coconut and vanilla your fave my fave uh citrus and herbal musk and maybe even lavender and rose that's mine you want to smell like flowers i use native deodorant and i love it it's just so soothing my armpits feel like fresh and smooth as a baby's bottom make the switch to native today by going to nativedio.com sit with us or use promo code sit with us at checkout and get 20 off your first order that's nativedeo.com sit with us or use promo code sit with us at checkout for 20 off your first order so they tell you you're fine so i was like well that doesn't seem like enough yeah that doesn't seem she just like felt it i was like that's not enough yeah so i found a clinic up in harlem or the bronx called the ralph lauren clinic this clinic would do a biopsy if you were uninsured like whatever and i literally am like standing with my coffee my cell phone i'm like talking to my boyfriend i'm in the bronx on like a tuesday morning at 8 a.m or something and i witness a car hijacking right in front of me oh my hand is parked at the stoplight this guy runs up he starts banging on the side another guy gets into the passenger side he holds a gun up to this guy the driver gets out they take the van and speed off and i was like i have to go oh my gosh i have to go get a bunch of them when they say hijacking jesus i thought it was like someone's out at the gas station there are people out of their bodegas like sort of looking and i was like i have to get inside somewhere i'm not safe harlem is very different now but yes yeah i think this was actually the bronx because then i eventually end up at harlem hospital but i go i find the place i tell them i witnessed a car hijacking they're like oh really and they do uh a needle biopsy which is a fine needle aspiration so they take kind of like a pretty normal sized needle and take a part of it i wait however long however many days till the lab comes back and they say inconclusive inconclusive yeah they didn't get like a good sample or they needed more who knows so then does that even i what does that mean a lot of inconclusive yeah yeah but that wasn't not good enough that wasn't what i was looking for so then i at this point it's like august basically i haven't told anyone in my life that i've found this okay what month did you find and then july july august okay because i just don't want to worry everyone right um and i find a clinic in harlem that sees people for things that diagnose diseases every thursday and you go every thursday and you take a number and you wait like nine hours and you hope to be seen and they do all sorts of stuff and this is for people who are uninsured how long did it take you to find these places yeah i mean like accept uninsured people to you know like they only take people on thursdays you're completely out of your i'm completely neighborhood yeah how do you find these places i mean i don't know i guess i was just looking online i think my boyfriend was helping me um and i started this new job in august at a teaching at a new school and i had to be like but on thursdays i have to leave but you didn't really want to tell them why and they were like we just it would literally be like if i hired you today and you're like but i need friday off and you'd be like um excuse me uh as a teacher that's kind of a hard right right luckily in august we were just prepping oh okay that's good okay so i go to this clinic and i wait and i wait and they do a mammogram and i wait and they're asking me all kinds of strange questions like do you smoke cigarettes i don't are you sure you don't smoke cigarettes no i really don't do you have family history sort of um i do this mammogram i went one week nothing happened i went another week i got a mammogram i went another week and they did a biopsy and basically i met this radiologist doing the biopsy who took me under her wing she like was like you remind me of my daughter we're gonna do this biopsy she also ordered an mri we do the mri um and i go another week to get my results so we're now like almost into september i'm doing this every thursday andy basically you you had to have a physician like kind of take you on right instead of just in america is so scary instead of just normal care yeah wow and so there was this one time i went and i my number didn't get called and so i just went up to the lab in the hospital and i knocked on the door and i was like do you have my lab results and this lab technician comes out and he brings me into this room with all these microscopes and he's like sit down sit down so do you have family history are you a smoker he's asking me all these things and you can tell he's so nervous i'm like can't you just tell me the results of the biopsy and he's like visibly sweating he's a tech he's not a doctor allowed to and he he like sit down sit down and then finally he's like you really have to talk to your doctor oh you're like my doctor doesn't have time my doctor i'm not getting seen so finally i start texting this radiologist and on labor day weekend she is like come in on saturday morning come in on saturday morning bring your boyfriend and by this point like i knew yeah of course it's so weird like the lab tech almost told me like i'm going round and round it's been two months i've been tracking it down and finally they told me yes it's cancer and actually the radiologist then drove me in her little convertible sports car back to my apartment after that it was so like the way i got diagnosed was so weird because i just had to like find resources right and it seems like she was just doing this pro bono and she just yeah taken by you she would i think i reminded her of her daughter i mean rachel you are a very kind person and and like you know just i can i can see how how this sort of played out in that you really had to work to get the care that that you deserved yeah but imagine if you had less resources than i did less access to internet less time to look things up just to just wait at the yeah if you had kids or your job wouldn't let you off there were like 100 people in that clinic every thursday or if you weren't like like an exceptionally nice person you know like even if you're not a nice person you still deserve to be treated yeah i know medical things i have a lot to say about health care yeah we won't say it all i mean i'm sure you do too but like yeah i mean being both in like working and being a patient like i've had my fair share of experiences where i have to kind of speak up more than i would like to i'm not telling people to be a pain in the ass but i'm telling you that everyone should ask questions right everyone cause when you go home your health care team is not following you home you are responsible for asking questions and making sure you understand what's going on and if something doesn't feel right then i implore you to go seek a second third fourth opinion yeah so i got diagnosed and i'm still uninsured for like 60 more days at this point until i've reached like 90 days at my job so i just start doing all of the prep work for surgery and chemotherapy and whatnot for when i will be insured so that involves going to public hospitals and doing different scans doing bone scans doing full body scans they're basically looking for additional tumors and this becomes important later in the story maybe but i did all of this at like public programs and public hospitals and i still racked up a ton of medical right even even public health care it's not free and i got i had um i had some connections in the city to people who were older and more connected than i was and we did a lot of research and i picked this big leading oncologist at nyu to be my like lead to lead my sort of team and i was paying out of pocket for her just every time i saw her and i was trying to see her very limited so i just would pay like 600 every time i saw her 600 dollars i did not have right as as as a nanny and teacher and a teacher yeah but and i was teaching second grade at this time and so anyways i do all of that and we come up with a plan we're gonna do a lumpectomy a course of chemotherapy and a course of radiation which is pretty standard so so that's surgery to remove the lump and then chemotherapy and radiation yeah and i had actually wanted a bilateral mastectomy to start which is just to remove everything and they had said seriously it's too extreme they're like you're you're overreacting you're young you're healthy where it's very contained we believe just remove the lump it's a much easier surgery um you're gonna be back on your feet you're gonna feel more like yourself for your psychological health we think you should not do that and so i listened and they didn't see any evidence of like it having spread to like the lymph or anything like that well they did but not yet so the first step up is surgery so we do a surgery they do a lumpectomy to remove the um lump and the tumor and as you mentioned they check your lymph nodes so the lymph nodes under your arms are like the closest thing to your breast where cancer would travel through those to go elsewhere and my sentinel sentinel node which is like the leader the line leader basically did have cancer cells in it so then they pulled 10 more lymph nodes and they didn't see any of those in the or so they send those off to a lab and so then you leave there you have a drain for a while you have a little surgical bra the additional nodes had no other cancer so they believe it was spreading but it stopped right at that first lymph node they thought they got all of the tumor it was really clean and eventually you heal from surgery the drain comes out and like you're kind of like good to go but they're not going to trust that right they're going to take out the insurance policy of chemotherapy and so the chemotherapy that i did at the time was act um plus herceptin so my cancer is her2 positive um which is like a growth hormone i'm actually not familiar but it's not estrogen and progesterone positive so you can get it through those hormones but mine was her2 positive um and it was like a two centimeter and it was like stage two b so it's like an a big tumor and a fairly aggressive cancer um so then they do chemotherapy they don't do this chemo anymore yeah because it is absolutely brutal and it's not very the kind of chemo i did is not very sophisticated it's just like let's kill everything brute force wow it's like let's wash out your system of all fast-growing cells and it is um unbelievably hard were there other options or not just i think my doctor so i had a couple of oncologists i had my big sort of oncologist who was more like a research doctor and then i had my treating oncologist who was the person i was seeing every other week and they prescribed this like four-month dose of chemotherapy and it was basically i think they were a little bit scared because i was 24. 25 now at this time yeah like when you have a 25 year old patient you're like that's a lot of life left to go right yeah let's go let's get rid of this yeah it's a really big day because miles our podcast producer brought donuts so cheers to those fizzy feel good moments that make your whole day with huzzah a probiotic seltzer with benefits [Music] yeah cheers baby huzzah is your new favorite seltzer with added probiotics and three grams of sugar or less hazak contains added probiotics to support healthy digestion pizza has a delicious full flavor taste and three grams of sugar or less per 12 ounce can huzzah has three flavors that go big on the flavor without piling up on sugar or calories they have raspberry and lemon strawberry and hibiscus and juicy pear which is what i'm drinking right now and it is very good so talk about huzzah probiotic seltzer by using code sit with us for twenty percent off your order at drinkhuzzah.com that's code sit with us s-i-t-w-i-t-h-u-s for twenty percent off at drink huzzah h-u-z-z-a-h-dot-com okay so they prescribed you the like brute force chemotherapy really tough chemo um what was that like and then i mean it was okay yeah it wasn't good no no of course it wasn't good it wasn't good it was like psychologically hard to get sicker right like i was a healthy 25 year old and then to like get sicker every week right yeah sucked yeah all right i know it did yeah yeah but what are you going to do you're just going to man up and do it yeah you know and so what was what was life like at this point i mean you you uh you were working but i was working i was teaching yeah but i was like missing a day or two a week oh my god i can't believe that you were still going to class i know who are you i don't know i'm super woman like in between like no you're like teaching a lesson excuse me let me just excuse myself you know i mean yeah but you do all sorts of crazy stuff because you think you need to and maybe teaching did help me in some ways like psychological ways yeah yeah like some sense of purpose and normalcy other than like being a cancer patient but also i did crazy things like my friends came to visit and i was like so sick from chemo i couldn't really like get out of bed or off the sofa and i was like but i have to buy christmas presents for everyone can you guys go here and buy this and here and i like made them shop for christmas presents for all my friends because i felt like i needed to give them christmas presents you're so cute but like when i look back i'm like what was the [ __ ] day why was i buying christmas presents for people no one needs anything what's wrong with me it's such a testament to your like optimism at that time you're like this is this is not something that i'm going to be dealing with forever yeah yeah [ __ ] cancer people are still getting christmas presents people are still getting christmas presents i know wow and you you had you had a party to shave oh i had a party to shave my head which was so i mean i think it's a pretty good idea because it's going to be like a terrible out of body experience whether you do it alone or with a bunch of people but if at least if it's with a bunch of people you can kind of like distract yourself yeah right yeah rachel actually sent us this video before the podcast and zach and i were watching it and i was just a puddle of tears i just i just watching you just like take control of the situation like i know of patients doing that but just to see you doing it and having a smile on your face if you cry i'm gonna cry okay we're just sitting on the cry couch area just a puddle over here but like what was that like it was very early on in your treatment it was early on it was only a couple weeks in but i noticed my part was getting like bigger and bigger it wasn't falling out in chunks but like my part got wider and wider so i was like we gotta shave it before it just looks terrible but we made this grave mistake so i shaved it my friend luke shaved it for try guys fans out there luke is the guy who came and did the old age suits from mit because he's an mit writer he's been my friend for the last like 20 years um and he shaved his head and the mistake we made was the next day we all went to see harry potter and luke and i are sitting in the theater and we're watching and we're like do we look like voldemort we look just like voldemort what were we thinking oh my gosh yeah it was a weird and then of course whenever you walk outside you're like oh everyone knows i'm a cancer patient they don't because people shave their heads for whatever reason but you think that yeah right you're like i remember getting in a cab to go to school the monday after i shaved my head and the guy was talking to me and i was like he knows he must know i was wearing a hat how would he who would he know yeah and what would he care i mean you know other than on a basic human level what would he like how would he know right it's like all in all in your own head i know it becomes such a part of your like being at that point yeah that you know especially when it's so obvious to you and you're like walking around you can't think about anything else but people are mostly thinking about themselves oh yeah yeah yeah which is a good thing when you want to be like a little more anonymous right four four months of chemo and then 30 treatments of radiation which is only like a month because it's every day um and i think that's pretty standard yeah actually when i first became hemox certified i was shocked to learn that a lot of the times with pediatric leukemia and lymphomas they'll be treated for three years and like wow a lot of the kids that we see are barely even three sometimes so like that's like they just got to this world and yeah yeah you kind of build the relationship with these families and stuff and having to talk about another thing that i was shocked to hear was when i first became working in that field was a lot of the times if you have like a 16 or like 11 year old boy you have to talk to them about family planning and sperm banking of course yeah just because of some of the chemotherapeutics that they use can make them i mean this is what happened to me well they wanted they wanted to start my chemo on a certain cycle did they talk yeah and they were like well do you or do you not want to freeze your eggs and at that point it was out of pocket wow and had you even considered this at this point you were like you know i know that children are a huge part of your life you're a nanny you're a teacher yeah and you knew that you wanted i knew that i wanted kids and basically um they were like okay you can have one more period cycle before we start chemo and on that cycle you can you can freeze your eggs if you want but it's going to be sixteen thousand dollars out of on top of everything plus an additional like 3 000 per year to store them i'm 25. i've been a nanny i don't have 16 000 and i don't like my parents don't have 16 000 i just paid like five grand out of pocket for the genetic testing to figure out if i was bracha positive or negative also out of pocket i'm brack and negative and p53 negative um so i don't have the genetic mutations but i was like i can't do this and so sweet my college guy friends got together and they each donated like five hundred dollars into a pool of money and i went for my eggs and i was like these are 25 year old boys and they are all working like as assistants at a marine biology center as teaching assistant like none of us have money the people just came out of the woodwork they did but i sent them i sent all the money back because i eventually so as fate and your body would have it happy international women's day my period started very early because i was so stressed and they were like you have to you have to freeze them now on this cycle we're not going to wait a whole another month to start chemo and i just panicked i like sat comatose on a sofa for like three days that's a lot of information a process yeah like i was like i don't have the money i don't know what to do also they pump you full of hormones to pull your eggs and my oncologist was like i don't really want you doing it but i want kids kids are important to me and i just sat there staring and i had been nanning nico for two years and he is the most darling child now he's 14 so he's very big but he was so important to me at that time that i eventually came to the conclusion that my love for nico proved that i could adopt like he was so my own i in fact often would comment like oh he got that from me because he would behave like me i was just his nanny he was so important to me and is um that i was like okay i'll just adopt if i have to yeah and i ended up not freezing them but that's a whole nother stressor of like having cancer as a yes and you knew you wanted kids like can you imagine having this conversation and not have ever thought about a seven year old boy yeah or like a 16 year old boy you know it's a lot or a girl or you know yeah yeah it's all it is a lot a lot to consider and i did lose my period during chemo yeah um and encountered like early menopause like hot flashes and stuff right right like your body basically went through uh like a menopausal yeah yeah the try guys at one point were like let's do try guys try menopause i was like no it's not fun the title is funny but like what we'll make you do it's not like labor like where we can make you like experience some pain you're just sitting on the couch and like you're just like watching my mom go through that oh no she was a little mess really yeah she was a little your mom is sort of southern at heart she oh she absolutely the favorite i was she was uh the other day she was sort of sitting on the couch and she was like taking off her shirt she was like oh god i can't tell if i'm getting the vapors or if i'm just warm should be fun isn't that what the vapor is so okay so i do the radiation we do the damn thing i do a year of herceptin i had a metaport put in i have the metaport taken out yeah and so metaport is when they basically put like a permanent line and just because when you're getting chemotherapeutics it they're very not all of them can go through the vein and if they were to dislodge and go into your skin tissue there you kill it it could become necrotic like it could be you could get a burn so it's basically like a picc line that goes straight to yeah wherever like into your arteries and i couldn't ever have chemo in my and i still don't get stuck in my um right arm because of my lymph node removal yeah and so i can only do the left arm and i have teeny tiny veins i did two chemos um without it and i could feel it traveling i could feel it burning its way up and into my veins and they were like that's not good and it has to be internalized usually for cancer patients oncology patients because yeah when you get chemotherapy your white blood cell counts drop which means like if you were to have an externalized any sort of central line it's more risk for an infection whereas when you're getting chemotherapy it's just accessed and then when you're finished you take it out and like you can swim you can take a bath felt like a hard thing under my skin and they would still puncture the skin to do a blood draw or give me chemo or whatever but it would click into something right under it yeah interesting it's like a little button okay yeah yeah i i highly recommend it i really do yeah it's that i think you're like oh i don't want to put something in my body that makes me more of a cancer patient but it really solves things yeah and like you can hide it like you can still swim and stuff some people i don't even see the scar like i was just thinking about this and recounting that i wore a wedding dress that showed it because yeah because i don't see it yeah it doesn't it doesn't occur to me on certain people depending on where they place it some people are really like it looks like a little you can see mine oh yeah i just it doesn't bother me no that's such a testament to yes just how strong you are that like you're like this is this is the scar that i have from this experience and this is me yeah it is i don't know i i don't look in the mirror and think oh that [ __ ] scar yeah i think a lot of other unkind things about my buddy but it's not that but it's more like ah i stopped moving during quarantine and that did not do great things for me well it just proves that you were no longer a cancer patient right so i had it taken out and so then my oncologist ordered a mammogram we did them they came back clean and i was like i want an mri yeah i'm 26 at this point now mammograms have never they were not designed for 20 year olds i have these giant boobs and i just i would feel better with an mri you were trying to kill cancer cells that may have traveled i want an mri and she told me no she told me no something like six times and then the oncologist under her also told me now so i went to my surgeon's office and i cried like a baby i threw over a chair i walked into her office and i threw down this chair and i was sobbing and i was like i want a scan and my surgeon very politely explained to me that insurance wouldn't approve it i was like i don't give a [ __ ] and honestly i had no thought that they would find cancer i just thought a mammogram was shoddy work right yeah yeah and so i like threw down this chair and i slammed her door and i acted like a child and she was like okay i'm gonna order it for your psychological health okay okay whatever it takes um so they order it i do it they call me at school one day they're like we found this tiny thing this is why we don't order mris it picks up every little thing and now you're gonna go into a tailspin but don't do it it's gonna be fine come in and get a biopsy but also just the fact that you like that you understood what was happening with your body so completely that you were the one who had to say you know you found this before this like mammograms were not enough previously give me the mri yeah and that finally someone listened to me i don't know about you maggie but i have been cooking a lot more in the kitchen and getting a quality chef knife from miesen makes all the difference miesen makes it easy for you they've designed their chef's knives to replace an entire set of knives and its unique sloped handle not only allows you to chop more efficiently easily and safely but the elegant design also makes you want to show it off rather than stashing it in a drawer mison is two or three times less expensive than other premium knife brands for the same amazing quality meson knives are crafted with high grade stainless steel so they are stay sharper longer and last a lifetime the mison chef's knife is legit and verified it has over 5 000 five-star reviews from real pro chefs and also has a cult following among home chefs and foodies i actually love these chef knives they stay sharp like i said the blue color is so cute i don't want to put it in the drawer i want to leave it out on the countertop which is not safe because i have a toddler step up your cooking game now and head over to mizin.com sit with us for 20 off your first order that's misen dot com slash sit with us for 20 off your first order of course they biopsy it and it's cancer oh my god and is it new cancer that grew during treatment is it cancer that survived the chemo and radiation it's in the same breast right in a slightly different location is it cancer that they missed on all of their scans because i was in these public hospitals that were overwhelmed going to clinics they missed it it grew it survived no one knows it was much smaller than the first so it wasn't palpable but there it was and at this point i have less options because at this point i've done a lifetime dose of radiation a lifetime dose of acd and i'm just like stuck yeah yeah yeah what are you and i'm so mad at them yeah because like what you what your fear was in getting the mri has proved that you were correct and yeah and this is like one of the situations i think i thought that was gonna happen and i just knew that a mammogram wasn't made for me yeah yeah i mean from the beginning you like you were outside of the normal bounds of yeah like of a cancer treatment you know you're young like the and everybody is negative and they just they don't know what to do yeah you've just had like at this point you've had to advocate for yourself almost constantly like from getting a diagnosis to getting treated to following up my big oncologist like the head oncologist said the shittiest thing to me anyone could say she called me after it was positive and she was like well you know catching it now versus catching it on a scan later doesn't really affect your survivability what i i never saw her again after that but she was like the numbers don't change we would have done a scan in six months and it doesn't actually change i was like excuse me are you just trying to make herself yeah is that just her saying i was right yeah that's her saying i was right and the data doesn't change but i like at this point my college boyfriend has plans to go to graduate school in a different state i had like was thinking about quitting my job and my hard-earned health insurance i was going to move like i i'm a person who has like a life right that she wasn't taking into consideration at all i never i i i broke up with her on that phone call and was like i will not be seeing you again yeah right um good for you also you know just like i mean i find it difficult to have confrontational conversations with anybody and and here you are having like one of the most difficult conversations of probably your life and and standing up for yourself and saying like you cannot speak to me like that no i will not accept that kind of treatment from my care provider yeah and she i don't she didn't take tons of patience because she was like head of the department like rockstar oncologist maybe she had been working with numbers and not people for too long and she gave like a lot of talks and stuff and i'm i think she's very intelligent but i was just like oh oh no yeah we're done oh no yeah like i'm a human being yeah i you need to treat me as one yeah i don't care about your ego no but it's so crazy how much you have to like just stand up for yourself in the clinic setting like in the free setting in the like i'm paying hand in foot setting in the private setting like all the time you're the keeper of your of your of your health yeah like it's just you no one else lives in your body but you right yeah all right i know and so then we did round two and and round two i mean this this must have been completely different yes so now i get to have the bilateral mastectomy the thing i wanted from the start is where we're back at so that's removing both breasts all the tissue the whole nine yards um did you ever consider not doing that no i well here's the thing actually i did in the very first conversation with my surgeon when she gave me the news of the biopsy i was like i want another lumpectomy and she was like we can't yeah we've radiated this breast it's not going to hold up the tissue is not going to hold up once we take once we do surgery on it it's going to fall apart it's like it's not sustainable you don't have an option wow she's like we don't have to take both breasts but why would you do this big surgery and not take both um and i briefly asked someone if i could still breastfeed out of one boob and they were like no girl that's not really how it works so we did a bilateral mastectomy where we take both boobs and um at first i was like i don't want boobs just no implants just flat yeah and my very sweet surgeon who was this really cute korean woman who wore all of these emeralds and diamonds all over her hands and ears into surgery all the time she was the most bedazzled person i had ever met she was very fancy so i had two surgeons for that like my breast surgeon and then my plastic surgeon um she was like nothing's gonna fit you'll never wear a swimsuit made for women again you're never gonna put on an evening gown or a day dress like nothing's gonna fit you are you sure you want to like go flat chested she's like i think you're going to just think about your surgery all the time and i was like okay fair enough how small can we go and she's like okay i'll go as small as possible i'll leave your nipples in like a normal place so you look normal what well i hope you would they take you there a lot of times they take your nipples but they're like you're really young you want to save your nipples we'll leave them in a normal place but so if you have really big boobs and you want to go really tiny your nipples would then move to a really tiny they would like move too far they'd go really far down or up okay and so she was like we'll give you as small of a chest as we can while leaving your nipples in a normal place and i was like okay that sounds good and i think it was good compromising i think it was good advice because it was like i looked as much like a regular human being afterward as possible i didn't and i appreciate that now years later yeah right and honestly to be frank they look very good everyone's very impressed when i was in the hospital giving birth the nurse came up to me and she was like i heard you were a cancer patient and your boobs are fake is that true and i was like yes and she was like my colleague just got diagnosed with breast cancer and she has to come see i told her they're the best ones i've ever seen and i was like bring her in you're like thank you yes please they're scary you don't the scars are underneath i have a lumpectomy scar here but the scars are underneath and the nipples are regular and they look really real and i don't even have to wear a bra like that i love it they're pretty good yeah they're very relaxing honestly so you you got a complete mastectomy yeah so i got a complete mastectomy um they do a thing where they just put safe space savers in at first so they remove all the tissue they put like a little balloon in there basically just to hold um and this is so weird this is so sci-fi it's like deflated when you first get out of surgery and i had three drains so drains coming out of your body so your body learns to process all the fluids again the drains come out and then you go in and they pump up the space savers my college boyfriend watched it and he was like whoa that's cool i was like it's wild and they like increase the space that like your muscles can handle a little bit at a time over the course of the summer and they don't do a reconstruction surgery where they give you your silicone implants until after chemo's done because you're still vulnerable during chemo so i had to do chemo again um i know and this time they didn't know what to do yeah like i'm really young i did the really intense chemo no one knows what to do so my people at nyu outlined a course of like pretty experimental chemotherapy and i took that information i went up to dana farber in boston and got a second opinion from their head of like oncology and they like gave their notes and like then i took that information came back down to new york to nyu and between the two we negotiated like a pretty experimental course of like four to six drugs wow i'm i'm still just floored by how involved you are in your care in your care thank god teachers have summers off because i needed the time to do this chemo and like figure it out yeah no one i think we think our doctors would be like oh here's what you should do and here's how you should do it and let me know how you're feeling because i'm going to take care of you but doctors have 65 of you or whatever yeah like and so you have to do it and doctors are humans yeah absolutely doctors have you know lives of their own they could be they could have just gotten off a phone call with one of their kids and now they're you know here they are talking to you but they're thinking about something completely different or yeah and i really think other than the person i dumped i really think my doctors cared for me deeply but i also needed other people's opinions you know sure you had to you had to be there for yourself yeah and your experience was so unique to something someone else will go through and like getting all the information is only empowering to you so getting a second opinion yeah and formulating your plan from there i did this really smart thing that i would highly recommend anyone listening who is starting out on any kind of medical journey do which is that i had a moleskine notebook i don't know if anyone like you does this and i always brought someone to an appointment with me one of my friends all of my friends were very young we had not important jobs we had no money and they would literally drop everything to take the bus from boston down to come to a very normal appointment with me so that i didn't have to go alone my best friend shady came down from boston just to go to an mri with me and i'll never forget it i got out of the mri i'm crying for no reason at all mris don't hurt they're totally fine i know they look scary they're loud but you're in your cave you know yeah you're just a scared person in life right like you're like oh my cancer in my body i'm really scared and came out and she's holding two individual bags of doritos from the vending machine and i was like i love you thank you blue and red blue and red of course okay um but i at every appointment i had someone with me every single time and i had them write down in this one notebook everything the doctors were saying every drug the course like what sort of time frame and i had them write it down because when you're receiving all of this information as the patient it's washing over you and you are kind of blacking out because you're so overcome with like emotion that you can't focus on it and you can't remember and also you have like chemo fog on your brain so you don't you're not thinking straight and we taped every doctor's card in there and every nurse's card in there i still have this book but so that i knew so i had written down what the drugs were what the side effects were who was administering them their cards their fax numbers everything in one location not on a phone in a physical notebook yeah highly recommend that's very smart because then you can go yeah because there's definitely that like but if you're indonesia you know from being in a i i even get that from just like going to a doctor's appointment and i and i think they said something that they didn't actually say like ned and i will be like no actually they said we could start feeding them and you know we could start sleep training at six months and i was like no they definitely said four months you know you never yeah yeah and with so i always brought someone with me i would hand them the pen and the notebook and they would write it'd be your medical scribe exactly you need a medical scrub so then i did this experimental chemo and it was it was crazy i fully believe i was allergic to two of the drugs really yeah i just kept landing in the er over and over again for weeks at a time with like a fever of like 105 106 a heart rate of like 130 i was like turning beet red and i just thought i was they would do spinal taps they thought i had like contracted infections through my metaport or like maybe i gotten bitten by like i had gone out to fire island at one point and maybe i gotten bitten by something i had lyme disease or got like an infection because my heart rate and my temperature were just so high for no explainable reason but i fully think i was just allergic to several of the drugs so we were like messing with the chemo cocktail all summer long you know maggie it has been raining a lot in la recently and i get really affected by the weather yeah same that slight feeling of depression it really starts to get exacerbated when it's dark outside betterhelp is one of those apps that i can turn to when i need someone to talk to yeah betterhelp will assess your needs and match you with your own licensed professional therapist you can connect in a safe and private online environment and you can start communicating in under 48 hours it's not self-help it's professional counseling done securely online and betterhelp is committed to facilitating great therapeutic matches there's a broad range of expertise available and it's more affordable than traditional counseling and anything you share of course is confidential they offer licensed professional counselors who are specialized in depression stress relationships sleeping trauma family conflicts so many people have been using better help and they're recruiting additional counselors in all 50 states i want you to start living a happier life today and as a listener you'll get 10 off your first month by visiting our sponsor at betterhelp.com sit with us join over 1 million people taking charge of their mental health again that's betterhelp help.com sit with us you have gone through many lifetimes at this point so many lifetimes yeah just it like in terms of the experience that you had as a 20 something mm-hmm right i mean the 20s were wild yeah you're just beginning how they were a while for that was just a start i know it's like an old woman in my 20s but so i did it it was hard it was not it was not a good time it wasn't as hard as the act in some ways but it was not easy and we were constantly tweaking it and basically it's hard to look at your doctors and have them be like that this is what we think would be best but there is no protocol for this because it's like a made-up protocol and it's experimental yeah at this point yeah that's hard it is it's hot i think it's really hard when there aren't easy medical answers to they can try and standardize as much as possible but some things you kind of have to and lots of people have like ongoing chronic things that don't have names yeah that is so shocking to me not cancer but like i had friends simultaneously to me go through things that are like a variation of like crohn's disease or maybe they had a parasite but they had ongoing chronic conditions that really just didn't have a name or an answer or a treatment plan obviously right and i found it something so hard for people yeah wow and so when did you come out the other side and then what next what you know what what like what was follow-up like what was yeah so ended that did the reconstruction surgery and then basically after that i see an oncologist every six months and get scans every couple years and see a surgeon once a year and that is that i did a year of herceptin after that which is the antibody therapy so i kept my port for that until it was done and then i had it removed um and i am due now to enter some new clinical trials which are basically just genetic paneling on myself to look at different things i've done it a couple of times since then this has been 10 years going on 11 years since i was first diagnosed um and they've never found a genetic link but every few years my surgeon my oncologist here in l.a pop up and are like hey would you like to do another genetic panel and i always say yes because it's mostly just survey and blood work right um and i just i just realized that many of the doctors that you were talking about uh correct me if i'm wrong or female almost all my doctors were female i actually do have a male oncologist here in la and i like him a lot he's never been my treating oncologist but i was very clear that my whole team in new york when i was being treated be female and they were really why was that just something that that you felt strongly about that you i did and it was easy um but like i just sort of felt like men can get breast cancer and they can do it but women mostly get breast cancer and i just felt strongly that i wanted to be in a community of people of women yeah and of women who whose mothers whose sisters whose aunts who's you know have had it yeah i i think there's a difference and there's certain things you like don't have to explain right you know yeah and cancer's such an emotional um situation that like you know having a surgeon who would be like no i actually think that that you will want this later yeah you know like yeah and i'm sure there are many excellent male oncologists out there i have one here in los angeles who i really like a lot and actually i'll say this the first time i met with him my oncologist here in l.a who just monitors me you know and order scans he's never treated me but he and i sat down for the first time for me to sort of go through all of this with him i got all my records for him when i moved here and he goes do you know what would happen if you got cancer again and of course i was like no you know i was like on the brink of tears immediately and he goes okay well i do and it's not anything you've done before because what you did we don't give to people anymore like we've moved beyond that that that was fairly unsophisticated albeit effective medicine what we would do now would be much easier and we could treat you through being pregnant we could treat you through having young children so don't worry i know what we would do and i was like okay i love you wow i love him he's at ucla i was like okay i i feel better that is excellent care it is it's really excellent care so i mean i'm not planning on anything but i would i don't need to switch him to a female because he's a very excellent doctor i mean just just the fact that he took something that you weren't even thinking about well and that's everyone's greatest fear yeah is getting it again yeah i don't think i've ever told anyone this but during my first round of chemo i sat down with my best friend shady and i told her out loud i was like if i get it again i'm not gonna treat it of course i did get it again and i did treat it but i was just so when you're going through the first cycle of it and that intense of it like you're just like okay well if my body wants to kill me then my body can kill me because i can't do this again yeah and i told her that but i obviously did not mean it but like your greatest fear is that it'll happen again absolutely and at the time you meant it you know at the time you were going through this this feeling that like that i this is happening to me right now and i i can't yeah it sucks to feel out of control in your life absolutely and you know in addition to like truly physically feeling yeah awful but i think the way i moved on and maybe you see this with patients is i totally switched up my life post-cancer i like stopped dating my boyfriend of a very long time i moved to la and started working in a different industry i stopped teaching i i kept all of my dearest most darling friends obviously yeah but like i completely blew up my life in a big way and was like all the stuff i was doing during treatment i'm never doing again yeah and that was that was a it felt that was a choice yeah you were like i need a change i need things to be different i did a couple things in the meantime like i wrote for a year in seattle for this company in brooklyn and um i taught a little bit but then like at some point i was like i'm gonna work in the film industry i'm gonna move to la i'm gonna be on my own for a while i'm not gonna go see a doctor for a few years i'm just gonna like live and i'm gonna live very differently and i think i just needed like a second wind yeah basically yeah oh wow just because i mean going through that i'm sure that you realize how precious life is and like how i'm going to live life here i'm going to live my best life you know yeah and just like giving yourself something to look forward to is yeah huge and i just think starting in an industry and in a city where people didn't know that i was a cancer patient was like two the very first film set i ever worked on was a film starring karen nightly called laggies in seattle and i was so fresh out of treatment that um i just had my metaport removed like the week before it was super red and someone was like oh my god did you get stabbed and i was like oh no i just hurt myself and i just didn't tell anyone like i didn't tell anyone for a long time because i just wanted to live a life where like i wasn't a cancer patient and was that did that feel like a relief did it feel like i just think yeah it felt good yeah and was were you able to not think about it yeah i think so you were able to to say like this is who i am now i am i am past this this situation i don't think at first but i think eventually like time just goes on and you just it feels more burned yeah you're just living your life at some point it hits you and you sit back and you're like oh yeah right i went through this really hard thing let me think about it for a minute let me sit in the shallow waters of like wow that was difficult okay let me get out and like go do my job yeah or have my friends or like party hard or whatever yeah you know um not everybody can sit in those shallow waters and and be in that you know that really difficult space and then just walk out of it you know that that is something that i think is unique and uh you know kind of a just a testament to your strength again that that you are able to go back and experience that and be a witness to your yeah to to this part of your life like once a year all like my friends made me this lovely little book um where they all wrote letters and included photos and stuff so like once a year all like look through that book re-read through like the newsletter that like my boyfriend put out at the time to all of our friends and just kind of like relive it honor it and then kind of move on yeah um are you so friendly for everyone with your boyfriend yes he um not like good friends you know but we are still friends um he's married he had a baby right before the girls were born and they're due with a second very soon oh and his wife is lovely i all of our friends are mutual so i see well i used to see him and his wife um like once or twice a year at weddings yeah um we're mostly beyond that now in my friend group it's all babies now i i mean and now we have babies speaking of babies and now we have babies and now we have kids but that was not easy for you either no and it's probably due to going into menopause twice yeah right like no one knows though it's just called unexplained infertility but like i went into menopause with both chemos and i got my period on the other side of both chemos but chemo will normally take away yeah it sends most women into permanent menopause early because most women who are going through chemo for breast cancer are older they're in their 30s 40s 50s so if they're not already in menopause it makes them permanent yeah yeah and so now i have babies and here's the thing about having babies and infertility and all of that once you get the babies you have you never want any others and i'm sure they would have been great but i don't want those frozen eggs from when i was 25 because they would not be june and poppy right like once you get the kids you have you can't foresee it happening any other way because they would be different kids for sure so i'm glad i didn't freeze my eggs however i think that should be subsidized and people should be able to without any cost to them um so if you're going through that that's certainly a viable consideration but i will say my college boyfriend was kind of the best person to be with me during that time because not only was he like interested in the science of what was happening to me and like a student of this experience we were living but he never fell too deep into a pity party like i remember one time sitting in this hospital having to like drink this terrible drink for them to be able to like scan my whatever because like yeah i don't know i was doing some sort of fancy cat scan or whatever and an emergency came in someone had a gunshot wound or something i don't know someone had something coming in and they had to scan them before me and suddenly the drink would be outdated i had to drink it again i was like gagging every time and i just started to cry and he looks at me he's like come on buck up cole and i was like back up okay no sympathy for the cancer patient drinking this terrible drink and wanting to vomit like i needed him to just be like yeah get it together come on you got this and that was his attitude so i think that was really good um and i just think i think what helps most is letting people vocalize their deepest fears oh yeah so like saying like i wouldn't fight it again even though i did and i would letting them talk about that and also then being able to treat them as a strong competent human being who has a life on the other side of it [ __ ] up but also let's plan a trip to hawaii also let's talk about next christmas also like let's plan our lives for after this and you can tell me anything anytime too yeah you know like the duality of that so being there but also being being the most optimistic person and saying like there is another side to this for sure like you will be on the other side and we will go to hawaii and we will have christmas and that is why i'm buying you christmas presents yeah i think the hardest thing for me when i first started working because people are like how do you do it yeah how do you do i think that like some of the time we have kids that are like feeling good even though you know like get like some of the side effects of chemo or you've had previous experience with kids with similar diagnoses i think that giving them their space to express any sort of emotion that they have if they're happy if they're sad you never want to go into a room already down you know what i mean when i first started like i was always so sad it never gets easy watching kids go through this it never does but just going in and kind of like vibing off whatever emotion they have that day is really powerful yeah it just never does it really doesn't and you're a like you're one of those people who i feel like really can sense what people are feeling oh my god yeah i hate that about myself that's what makes you sad i don't want to know something that's what makes you so yeah it's really hard but thank you so much rachel for coming to sit down with us like you are so strong for me to be able to sit down and talk to us and talk about your experience like some people after it like do not want to have anything to do with talking about their story again so you are incredibly brave i'm happy to honor you on international women's day yeah legacy you know i mean a legacy for for your girls too yeah i mean those two are so lucky as their mom yeah i'm so lucky to have them and you guys no i know it's it's a it's hard it's a really hard thing and i think people go through it a lot with their parents especially yeah and people feel so uncomfortable with their parents like not being okay but i think as their kids we have to like yeah or your friends or whoever you have to like listen to them in those moments and you're right vibe off of whatever bringing if they're happy like do not go in as a pity party and make them feel worse about their chemo treatment like do not do that you got to stand up for them yeah i'm new well i mean i think this was an excellent excellent episode to uh to just you know honor rachel and honor women and uh talk about advocating for ourselves on international women's day um because this you know specifically breast cancer that's something that you know many women deal with um but that i hate to say that's all the time that we have all the time we have because out there the cry couch is done for now but this is not you know this is not the end this is not this doesn't mean this is the only time that we're going to talk about this because yeah i think we can talk about it again certainly right because it's something that that is you know it's a part of who who you are and it's yeah you know it's it's something that that i think makes you as uh wonderful as wonderful and as strong and as just just a wonderful friend and excellent person that that you are all right well i love you guys we'll have becky back next week i'm i'm very sad that she missed this um but thank you all for sitting with us today thanks guys we had a really really good time happy women's day happy women's day go out and uh appreciate yourselves today yeah and um and advocate for yourselves yes please and whatever if your coffee order is wrong go get it go get a different one and we'll talk to you next time bye

Channel: TryPods

Views: 460,881

Keywords: tryguys, keith, ned, zach, eugene, habersberger, fulmer, kornfeld, yang, buzzfeedvideo, buzzfeed, ariel, ned & ariel, comedy, education, funny, try, learn, fail, experiment, test, tryceratops, podcast, advice, miles, miles nation, secrets, show, talkshow, behind the scenes, youtubers, ramble, audio, video podcast, clip, segment, silly, becky, maggie, you can sit with us, try wives, girls, female, women, cancer, womens health, survivor, breast cancer, awareness, hospital, sickness

Id: 3y7ZuJ4mVQg

Length: 68min 22sec (4102 seconds)

Published: Tue Mar 16 2021