Season 2 Ep. 4: Emily Epperson Shares Her 2020 Experience: Childbirth, a Lymphoma Diagnosis, and Now Remission


This week on the Getting Better Podcast, I am speaking with Emily Epperson. Her name may be familiar to you because she was one of the contributors to my book, Better Together, and many of you have read her story and heard her wisdom there, so I am really looking forward to diving in deeper in this episode. Emily was diagnosed with Stage IV Non-Hodgkin’s Lymphoma about one week after giving birth to her first child. This is going to be an amazing conversation that you don't want to miss so click play and start listening. Listen to the episode above, on iTunes HERE, or read the transcription below. 

Find Emily on Instagram.

Episode Transcription:

Jessica Walker 

Welcome back to The getting better podcast with another episode to encourage and empower the cancer community. I'm your host, Jessica Walker. And today I'm speaking with Emily Epperson. Her name might be familiar to you because she was one of the contributors to my book better together and many of you have read her story and heard her wisdom through that book. But I'm really excited to dive in even deeper to get to know Emily and share her wisdom with you here on the podcast today. Just a little background, she was diagnosed with stage four non Hodgkins lymphoma about one week after giving birth to her first child, and she is just awesome. You guys are gonna love her. And I'm really excited for this conversation. So without further ado, welcome, Emily.

 

Emily Epperson 

Hi, I’mso glad to be here with you all today.

 

Jessica Walker 

So excited to have you and actually get to talk in real life. I was just telling her before we started recording that I feel like I know her really well because we I got to know her through the book process and on social media, but this is our first time actually speaking. So I'm super excited. I'm Emily. So if you could just start for anyone who doesn't know your story, share a little about where you were when cancer entered the picture for you.

 

Emily Epperson 

Okay, so it was all 2020 related, and I feel like everybody has that 2020 story, but mine really was a long year. I was due to have a baby at the end of March 2020. However, I developed preeclampsia and had him a month early. It actually was a small blessing because I shortly after that was I had to go to an orthopedist because I was not able to walk. The last few months or few weeks of my pregnancy I had lost the ability to walk. I still felt everything but I could no longer function. My leg my right leg did not function at all.

 

Jessica Walker 

Oh, wow.

 

Emily Epperson 

My left leg still function but it was just getting overworked. So it was tired. And so I went to a walker to help me get around the house. And then about two weeks before delivery. I ended up in like a wheelchair that I would just move around in the house in and so I've had pregnancy pain the whole time of Oh, it's sciatica. Oh, it's lower back pain. Everything was all of my symptoms that are classic lymphoma symptoms also resonated with my pregnancy. So I never once thought anything was wrong other than man I've been I have a slipped disc or a herniated disc because of this baby. So I saw an orthopedist after I went home, I got to be home for a few days and then went to my appointment and they said you know what, we need to have an MRI stat, you need to get this as soon as possible. Something's going on with your back. I, that night I left the ortho went straight to an imaging center. And like 7pm got an MRI and it was uneventful. I thought okay, we're gonna see what's wrong. And then you know, I'll go take some physical therapy. I got a call like six o'clock the next morning from the ortho telling me we found a mass. You need to go to the hospital immediately. I'm calling the ER and letting them know that you're on the way so I'm thinking Oh, man, I'm still not just I'm still not even thinking cancer at this point. I'm yeah, okay, I text my parents. Hey, I got a mass. Um, I didn't even know I didn't even say the word tumor. I just said, hey, there's a mass on my spine. Maybe I'll have surgery today. let you guys know. Go to the hospital. I just had a newborn so my boyfriend had to drop me off at the ER and let them will me in and he had you know, take the baby back home. So I had to do this by myself. So I'm having to be wheeled around I'm not physically able to do anything with my lower body so I'm in the hospital. Biopsies are being ran that night they did you know able to do a biopsy. More MRIs are done, you know, I just had all that basic testing to see what is this mass it's in your back. And this the part it still wasn't told to me cancer for several days because they kept saying we're not sure we're not sure. Let's you know ran this test. We don't know what it is. And that was where it was like what's going on with my body and I was advocating for myself. Hey, like just go in and cut it out. Like I'm fine. Let's go have major surgery. I'm already here cut it out. And they're like, well, if we cut it out, we could risk paralyzing you and I was like I've already been that way for a month. I'm fine, you know, working through that. But what it was was an actual cancerous mass. It was about 18 centimeters. And it started in my side and grew sideways and broke my back.

 

Jessica Walker 

So that's why Gosh,

 

Emily Epperson 

I had so much pain because it cracked a vertebrae, and it had encapsulated all of my nerves. So I couldn't, I couldn't feel but I could feel. And so it was actually starting to wrap around my major blood supply. And so when I said that the baby came early, it was a small blessing, because when they found it, it was kind of like, if you had waited six more months, we you wouldn't have been here. So I still, Jessica still at this point, we're not even really understanding that it's like cancer cancer, like we were the family that didn't even say that word in our house. Many people don't say the C word. And I was meeting with radiologists, I was meeting with oncologist this whole time and they said, Well, we know it something so I had a chest port fit in. And so when they finally gave me the diagnosis of diffuse large B cell lymphoma, I had been in the hospital for a week and they were like, we're gonna start your chemo immediately. So I did my first round in the hospital before being released. And then I went home and I was able to use an infusion center, where I continued and finished my treatment.

 

Jessica Walker 

What a whirlwind. Oh my gosh, absolutely. That's wild. So how soon just for my brand, how soon after you delivered your baby? Were you having chemo?

 

Emily Epperson 

Um, I delivered February 26. And I started chemo October the 12th.

 

Jessica Walker 

Wow, that that's why I'd like quiet the year and to have that happen. Like, during a pandemic year, I cannot imagine just the roller coaster that must have been. So I

 

Emily Epperson 

got lucky though, Jessica, because I got to be in that week of the hospital testing when visitors were still allowed. So they had started doing temperature checks, and you know, scanning that way for people and you know, hey, sanitize your hands. But at this point masks were not being worn and allowing visitors so my parents and my boyfriend were taking turns staying with me through a procedure or like being at home with the baby. So we had that small window where as soon as I was discharged, that's when the full pandemic hit was because I you know, March 23, March excuse me, March 13, I think is when it was technically declared a pandemic and that's the day that I finished chemo and was released.

 

Jessica Walker 

Wow, I you know what I feel like that's such a cancer survivor, people in the cancer world mindset is, like being able to say things like that, like this worked out perfectly. But like, honestly, like, there's those moments where, like, I mean, Tommy's been on chemo this whole year, and carrying a pandemic, which sounds like a tricky situation. But we keep being like, Wow, it's so amazing that we don't really feel like we're missing out on anything. Everyone's isolating, everyone's been extra safe. And it's like those like silver linings that you really don't expect to pull out. But like, how amazing and that that timed out so perfectly for you and your family.

 

Emily Epperson 

Yeah, and it really did, because my boyfriend works in the school system. So the schools were also shut down. So it's allowed us to be at home the entire time that I'm in treatment, and also with a newborn not having to really worry about anybody else but

 

Jessica Walker 

ourselves. For sure, absolutely. Couldn't, couldn't agree more. And just so for because I know there's a lot to that story, what we just went through, I want to break down a little bit did did you end up having surgery? Did I miss that?

 

Emily Epperson 

No, they said that, you know, that was one of the like fourth step options. Gotcha, gotcha, do chemo First, if it'll shrink the tumor. If it's still active, then we'll do radiation. If it's still there, then we'll go in and take out anything that's residual. But I was able to finish just with doing the IV chemo that people are most familiar with. And then I also had to do an additional six rounds of intrathecal where they go into my spinal fluid and put chemo so I didn't I did not have to take any radiation.

 

Jessica Walker 

And and you're currently done with active treatment.

 

Emily Epperson 

Yes, it November I was declared in remission.

 

Jessica Walker 

Incredible. That's such incredible news. I mean, starting the year off with a new baby and ending. I mean, with all that in the middle. I mean, let me tell you that that is that is wild. And I'm sure that you're still I feel like I mean, I know that we still are we're three years in like it moves so quickly when you're first diagnosed, like straight into treatment straight into, like, I'm sure like physical therapy and stuff that you had to go through to learn to. I mean, I don't know just if you had to do that kind of thing. And then you pause like I feel like as soon as you're done with all of that and you're like what just happened? Do you feel like you're in the processing part yet? Are you still just like Morrowind? Well,

 

Emily Epperson 

I both because when I was able to finish, I was like, okay, so I don't have to go to the doctor this week because I was so accustomed to going to the doctor every week for bloodwork or doing a chemo or doing an intrathecal that I was like, wait, I don't, when I finished in November. I haven't been at all in December. So I was like, that's really, it just felt really strange. Because all of a sudden, these people that I was seeing on a weekly basis was like, okay, like, see you later. In three months, or, you know, whatever, you know, the plan, are you so it's, it's been strained because it's it's still a daily reminder, I'm sure that even Tommy totally understand that like every day, it's still something in your life, remind you of your diagnosis. So trying to work through like, Okay, this is another day where I don't have to go to the doctor or I don't have to go do some type of treatment. And but then it sets in of like, okay, now I have to wait six months to find out if I'm still in remission. Mm hmm. And so that's what's really hard right now is you have to wait, and nobody likes to wait. No,

 

Jessica Walker 

I mean, Tommy. And I say that all the time that for us personally, the hardest part of everything is the waiting even just like being in an appointment and waiting for the doctor to enter to give the news like that 20 minutes feels like an eternity.

 

Emily Epperson 

I've experienced all the news by myself. even going to the infusion center with my blood work, calling my boyfriend on speaker so that we're getting news together when I was in the hospital,

I had a very unfortunate situation. I know, we're going to talk a little bit more about advocating for your cell phone here. But I'm where I had to get some really tough news by myself. And my boyfriend was only on the phone with me, you know, and it was it was just something people, I think can understand until you experience it.

 

Jessica Walker 

Absolutely. And the fact that I feel like another thing that we a lot of people mentioned in the book, and I believe you did as well that it doesn't end when treatment ends. And it's the aftermath that people also need support through it. Because it's it's so hard to explain. Because people think like, wow, incredible, you're in remission, like you're done with treatment. You did it. You're like, Yeah, yes. And, like, I just feel

 

Emily Epperson 

So much more. And you know, myself, I was even naive to that prior to it.

 

Jessica Walker 

Because I don't, because how would you know, you know, like until you experience

 

Emily Epperson 

Exactly. There's no history of you know, cancers in my family. So I didn't really understand either like, Oh, I'm done. But no, there's so much more mentally exhausting things going on. And also physical things for me that I'm you know, continuing to work on even though I'm not having treatment anymore.

 

Jessica Walker 

Yeah, I mean, it's Yeah, it's a whole, like, separate. Like, I think it's like when people talk about the fourth trimester after pregnancy, where it's like, that first season of having the baby, it's like there's another trimester post treatment. I don't know if that analogy really works. But

 

Emily Epperson 

because I felt like I was experiencing my fourth trimester with the baby early, so I was still experiencing like, things pregnancy wise, and I was still as a postpartum woman, I was back in the hospital, unable to walk and yeah, and I was put on strict bed rest, I was not allowed to get up for anything. And I kept kind of telling them and that's another thing that you know, we can talk about advocating side had to advocate as a postpartum woman and as someone who's getting a diagnosis of cancer

 

Jessica Walker 

Yes, we're I'm really looking forward to diving into that and and but right before we get to my next question, I wanted to circle back to regaining your mobility. What has that looked like for you? Have you been able to regain your mobility? What was that like to navigate?

 

Emily Epperson 

Well, at first it was a little scary because we weren't sure if I would give that mobility back. Because it just it almost appeared overnight of I was in the bathroom pregnant and I collapsed of like, oh, like what's going on? Like, why don't my legs work. And so during that one that stay in the hospital, did receive the treatment I was pumped full of fluids and air and full Astaire with and it actually helped to take all this swelling out of my body from pregnancy. You know, all the swollen ankles and the swollen legs and it helped take all of that swelling away so that when I got home, I was much better able to manage my physical self I could, I would have to lift my leg. But right away we started. Thank you so much to my boyfriend when he listens to this because without him I would have not probably been walking as fast as I did, we started he got me up, okay, we're moving like, even if it's on the Walker, like when I came home from chemo, no more wheelchair, like, you're, we're going to use the Walker, I'm going to help you, I'm going to hold you. And it was just, it was tiring. And there's days and you don't want to do it. And there was plenty of days that I didn't want to do anything but just sleep. But I, you know, we would slowly start walking and using like a, you know, a typical Walker that everybody knows, and, and putting the couches together where if I fail, I would just fall on the couch. I still had all my upward mobility. So I would just practice pulling myself up on the Walker. In my first follow up with my oncologist, I was still in the wheelchair and I said, I'm gonna be on my Walker for chemo. Like I'm, I've got two weeks, and I was able to do it, I had a walker, but I was able to do everything, get myself to the chemo chair. And, you know, move myself around in that manner. And I just kept trying every day, walk a little bit here, walk down the hallway, you know, try to strengthen my legs as much as possible. And I think just as my tumors shrink, it came off of my back, it came off of my nerves. And it allowed me to be able to, I have not been able to build back the same physical strength. But the limp is slowly getting away. I haven't fallen since June for so for anybody who thinks like, Oh, it's not a big deal. Like that is such a big deal for someone who's following falling down regularly. But I haven't fallen since last year incredible. And there's still things that I do very carefully. I take my time leaving out of our house there because there's a step, I do the same way getting into the shower every single time so that I know, okay, this leg can handle this. So there's just small things that I'm still working on. I'm building back that strength so that I can trust my leg again.

 

Jessica Walker 

I feel like that has it. I mean, there. I've never been in this situation. But I feel like it can probably feel so defeating to have something that you're so used to, that you can depend on, like your mobility taken away, but you found the strength and the systems and the support to be able to work through that. And I'm where does that I know it's like I guess people say like you don't know how strong you have to be toe strongest the only option. So it might be like that. But for you where do you think that positivity and strength comes from? Like what is positivity look like for you.

 

Emily Epperson 

Positivity for me is not always upbeat. But it's more about just the, the open and honest thing of what am i dealing with right now. And that might not make sense to some people. But it's just, if I can be completely honest with how I'm feeling, then I feel like I can make progress towards it. Where if I sit and I had those days where I just felt defeated. But having someone tell you like you can do this. You don't have to stay this way forever. Like, it helps you kind of change your mindset. And I pull on my strength from I was a college athlete who played sports. I had participated in triathlons when I was in, you know, my early 20s. And so I knew I knew my body could do it again. So if I just could get this strength through, eat, make sure I was eating and you know, taking all of my medications correctly, that I could I could work back the physical part. And there, I still have neuropathy. So I don't have any feeling in my leg, but I can move it. So that's the most important and I think just I was surrounded by people who weren't, like, Oh, yeah, like, it wasn't toxic positivity. But it was just like, you can do this. Remember, you used to be able to walk your body remembers, like, let's help it remember. And I really feel like that's where I drew from was just my boyfriend. Also being a college athlete. We just knew we had to grind through it. And it better if we just get over the hump of the really bad days.

 

Jessica Walker 

I love that you mentioned the way your support system spoke to you. And and like I know that toxic positivity is a phrase that is used a lot in the cancer world because it's so many people say like, just be positive, just like it's going to be fine. But it You're right. It's having those honest conversations that I feel like feel like true support as opposed to I mean, it's hard to know what to say. But this brings me to my question that I'm interested what support looked like for you this year and the pandemic. So if there are people who are looking to support someone going through cancer at this time, and you can't really be there, physically, of course, like in the same way we would be in a normal year. What was something that people did that really helped you or you felt like it's something that meant a lot? Do you have any recommendations of how to support someone in this time? Well, for me, it

 

Emily Epperson 

was just very specific Help. And of course, like, people care, and they say, let me know if I can help you or let me know when I move. And we feel burden as a patient and as our, you know, my direct caregiver to say, Hey, can we have this? But for me, what helped is I had people around me Say, do you have any diapers? And I would be like, you know, we're running low. And that's it. Let me tell you what sizes it let me tell you wipes or my parents would come up and say here, like, we got some extra groceries and just take that burden of Okay, that's one less trip to the store. Or one less thing that I have to worry about being mailed here. And checking for, you know, Amazon, it was very specific saying, Hey, here's $100 gift card to go eat. I might not, and that might last several days, you know, different things that were very direct. And it wasn't just, oh, let me know when you need it. It was already given to me without having to ask. So even people who weren't sure what to give me, oh, here's a book that, you know, I had a co worker say, Hey, I'm gonna mail you this book, I'm reading that I really like maybe you'll enjoy it during chemo. And I did like, I would take it with me and my chemo bag. And if I didn't get too drowsy, I would try to read some of it. So I didn't ask for anything, but it was just directly given. And that's what is hard. Because some people might want a blanket or some people might want you know, just to listen to music while they're in chemo. So it can be hard to support. But I felt that the direct of, Hey, I'm sending you this without you having to ask was really helpful.

 

Jessica Walker 

I couldn't agree more. I think that's an amazing recommendation. Because it's true. It's It's so well intended to ask, What can I do? What do you need, but it's just like when you're already low energy, trying to come up with something that you feel like isn't too much to ask for, or isn't weird to ask for. Like, I feel like nine times out of 10 we end up saying, well, it's fine. We're good. Thanks for checking in, but like, but absolutely just no one's going to be feel burdened by just a gift that is just thought out. And it doesn't have to be perfect. Like you said, it can be it can be anything but you're you're so right. Just like the direct support makes such a difference.

 

Emily Epperson 

You know, a shopping gift card, like whether it's Amazon, Target, WalMart, whatever, that you know, your person is going through is close by, you know, sending it through, everything is so digital. Now you can send everybody gift cards through email, you don't have to worry about the mail or, you know, being able to contact anybody, you just send it to them. It's like, oh, wow, okay, let me order some stuff that I need. Because for us one less trip out to Reno doesn't have to be put into any danger of bringing anything home with a newborn and with somebody compromise.

 

Jessica Walker 

So it was just one less trip that we had to like process, you know, for ourselves out into the community. Such a great idea. And now, like even knowing your timeline, more specifically, now, it's so awesome that you contributed to the book, because you are still very much in the midst of it. And I think you had so many incredible takeaways. Just like while you're still going through it that I'm just really impressed and inspired by you. And were you just from the start really open to sharing your experience? or Why did you feel like you wanted to speak out and give a voice to what you're going through and to other survivors?

 

Emily Epperson 

Well, I think the wanting to speak out kind of came later on, as I kind of near the end of active treatment, because I was like, I want to do something that helps. And everybody says that when they've gone through something, they're like, I want to do something that helps. But I really didn't know how, and I didn't know how to get it out there I have was very open from the get go with my family because I felt that they needed to hear it from me, Hey, here's my diagnosis, here's the plan. Here's Plan B, here's Plan C. And this is you know, what we're dealing with and very open. Because I felt like as much as people have good intentions, sometimes, you know, things get misconstrued as messengers pass along messages to other people. So I just felt that it was important to be open and honest. from the get go, what was going on with with like family and close friends, um, with my job, I was less hesitant to share immediately the lady that I worked for, and I'm just gonna keep that part private, but um, is she's also a breast cancer survivor. So she she knew what I was going through on that level. And so that was really helpful for her to have her kind of say like, I'm supporting you, however you need to support but let let people who care about you also know so I work with I'm a therapist, a behavioral therapist, and I let my direct families know who thought I was on maternity leave. I kind of had to You know, let everybody know, hey, I won't be returning back as soon as we thought, because of this situation and just kind of explained on the surface level, like, Hey, I, this was my diagnosis, and I'm not sure how treatment will go. So until then I'm just going to be on medical leave.

 

Jessica Walker 

And it's like, it's so specific to each person. But I think that that's also such great advice that you received that it makes it a little easier when you are have it not being honest. Because like I said, like we'd like intentionally keep something but, but like opening up just enough that you feel you can invite that support in as opposed to feeling like you're living like a double life, which I know, at one point, Tommy and I kind of felt that way, we were really trying to keep it close to the chest. But then, you know, close family and friends would ask questions that we didn't really have answers to that it just like felt too much. So I would, what would you recommend to someone who's trying to navigate, how to share when to share what to share,

 

Emily Epperson 

I decided to share with the people who I knew would directly affect my life. So I knew that me being an only child, it would directly affect my parents, and I knew that my parents were also willing to do whatever they could to help out. So I, you know, kept them in charge of everything. As far as like letting them know, that way, my boyfriend and I didn't have to navigate this totally alone. Um, and so then I, you know, family members, you know, branched out, and then like, my parents, church community kind of branched out and did like a drive for me for, you know, diapers and things like that, um, I let it be known to who needed who wanted to know, if someone asked me about it. I would say yeah, like, this is what's going on in 2020. I wanted it to be open, because I feel like it's a taboo topic that if someone's like, Hey, you know, what did you do in 2020? You know, 10 years from now. And I can say, Well, you know, I had cancer. People don't recall. And they're like, oh, gosh, and it's not a dark moment of like, Oh, no, we don't know what to say now. But like, Oh, really, like, wow, you made it through cool. And to make it more lighthearted, because it is not a lighthearted topic, it's a very serious topic. And for some, it doesn't end the way that we want. But I just felt it was important to let people know, like, hey, like, you know, me, like I'm a regular person. And I have cancer. And that is what it is. And so I just wanted the people around me to know what was going on. And I had family members who, who knew my schedule with treatment. And so they would be the ones that would message me. And then they would relay all of that information so that I wasn't being bombarded with text messages, or phone calls or anything like that of like, what's going on what's going on, it would, I would have a few certain people that I would, you know, update and then boom, they would send it out to the rest of the world.

 

Jessica Walker 

That is such a good takeaway, that I also often recommend that we have a system where I, I contact one person in my family, and then they know who to contact then and then they have their people. And it's just so much easier than repeating, repeating relay and relaying, especially when you're trying to process news. Yeah. And also, what you just shared reminds me of I'm pretty sure it was Bernie Brown, who said she prefers to hold her shadow in front of her. So you can just like see it, tackle it, know where the darkness is, as opposed and and that just that kind of came up for me when you're sharing about, just bring it into the light like this is what's going on. This is my truth. And I and I really appreciate you sharing that. As far as self advocation It sounds like you were doing that from the very start. And it sounds like you are are a very strong woman and knows what you need knows what to ask for. And I may just be there's just what I've gleaned from what you've shared so far today. But what did advocacy for yourself look like throughout your whole cancer journey and up to today? Well,

 

Emily Epperson 

it really started I think, when I was pregnant because I wanted things my way. So you know, it was recommended to me to go get an MRI, you know, when I started having the pain. I found I was pregnant in July, and by November, I was not sleeping. So I mean, it was a pretty quick progression of pain. And I just I wasn't comfortable with that. And I am not faulting anybody who does that. That was just my choice. I as I said, No, I've had sciatica before I've dealt with it before. As soon as I can get this baby out, then I can go back to more physical activity that I wasn't comfortable doing pregnant. But you know, I can do not pregnant and I'll be fine. So let me just work through it. I didn't want to take pain medications. It was just something I wanted to do for myself. And so it kind of started there. And then when that immediately kind of went From pregnancy delivery to boom, you are back in the hospital. I just was very aware of what was going on. And I because I also wanted the nurses that were dealing with me to feel comfortable with me. So like, hey, like, this is just how I am like, let me read my medication. I trust you guys, but you know, that's an I would put it off on me. I'm like, I'm just one of those people, like, Can I just read that really fast? And, you know, or if here's if they say, Here's ABC medication, I'm like, okay, I haven't taken that one before. What is it for? You know, and I would, I would take it because it was, you know, recommended by, you know, the oncologists and everything and the team. But I just wanted to know that way, if somebody asked me down the road, well, have you ever taken this and had side effects that could be like, Oh, yeah, I took that. And I didn't. So I just always wanted to be abreast with what exactly I was taking and what it would do. But also, the first real instance of like, oh, like I'm gonna have to really advocate for myself is, when I first received chemo, I did it in the hospital, like I mentioned earlier. Um, and I was on the chemo, I was on the oncology floor. But the the nurse that started it, because it started, it was like a 13 hour process, because it was new to me. And they wanted to make sure I didn't have any allergic reaction. Yes, it took about it took a full a full shift plus some to finish it, but the nurse who started it, when they were calling back and forth, and you know, I'm sure you're aware of this too, though. They'll tell you your camera, and they'll tell you how much and they tell you how long to push it through. And, and she said, Yeah, I think that's right. And I was like, Whoa, I think that is right does not work for me medically. So I had to you know, my boyfriend had to go find the charge nurse and bring her in. And you know, unfortunately, she was pregnant. So she was like, I can't touch the chemo. But I will be in here every single moment, you have to have a change. And that was every 15 minutes. So she was walking in with that nurse every 15 2030 minutes as it progressed to make me feel comfortable. Because I was not comfortable with someone giving me that type of medication saying I think that's the right dose, or I think that's how fast we push it. So those are just things that I continued to advocate for. And before they knew it was cancer, I advocated for like, let me go somewhere else do I need to go to MD Anderson? Do I need to go to john hopkins? Do I need to go to UCLA, ever, like give me the best care so that I can have a life with my child. And I knew that I was in a serious situation when the doctor didn't know, and he wasn't an oncologist. And that's when I I think all of us in the cancer world realize like how much we can can love our oncology team because they really get what's going on with us and sometimes other medical doctors don't.

 

Jessica Walker 

Yeah, definitely.

 

Emily Epperson 

And you know, this doctor kind of said to me and my boyfriend who was on the speakerphone, like you should just go make memories and enjoy your life.

 

Jessica Walker 

Ah, oh my goodness,

 

Emily Epperson 

six o'clock in the morning. I didn't have a diagnosis yet. I didn't have my port yet. I didn't know what was going on. And it was like, Wow, so like, that's what I mentioned, like having to receive some news. And you're by yourself because of either your family situation, you know, having to work or whatever it might be, you know, we had a new baby. So I would say by myself on the hospital, at nighttime. And so it was just kind of like, ooh, so I had to advocate for like, Can I please get on the oncology floor? Like, can you guys move me today? like something's going on, like, get me out of this floor. It's not worth. So just things like that. And you know, I think that we've all probably experienced that in our in our cancer community. At some point, somebody has done something where you're like, oh, my goodness, please wait for me. Don't you know, don't ever draw my blood again, or whatever it might be. So there was different things like that when I got my port. You know, they came in and middle the night and take my blood and I had to kind of say, No, you can't take it. I have a poor like, you can't access my arms. You can't access my port. So different things like that. I've had to navigate more so in the hospital setting, but not in my infusion center. They were phenomenal.

 

Jessica Walker 

Wow, I'm still I'm still kind of reeling that. I can't believe that someone told you that with so little information like without having, you know, even a diagnosis at that point that that was that's I mean, sometimes these things just like get thrown out. And I'm not sure that they realize how impactful just like flippant phrases can be like we hang on to every word when we don't know what's going on. So it's like, I'm so glad that you were able to be transferred to a team that was well equipped to deal with the situation but wow, it's like just brings up for me that once Tommy went to the dentist and he had like a red spot on his gum and the dentist who is of course not an oncologist or as has anything to do with Tommy's cancer history was like, I mean, it could be It's it's possibly oral cancer. And it's like him just saying that it's like we thought about that for weeks. And we had to go through, you know, go through all of these tests and things to make sure. And it was, of course, nothing. But when you already have the knowledge that this is happening, like this could be a thing, like you can't disregard comments like that very easily. So Oh, my gosh, I'm just so sorry, that happened to you. And you were by yourself, Oh, my goodness. But

 

Emily Epperson 

yeah, it was a situation where I look back now. And I'm like, you know, maybe maybe that doctor needed help beyond, you know, what he thought was his medical profession?

 

Jessica Walker 

Yes,

 

Emily Epperson 

I think he was, he shared some things personally with us. And I also have a background in marriage and family therapy. And so he said, You know, I think that he could actually have benefited from, you know, getting some help himself, along with whatever else, you know, he's going through. So it's just one of those things that unfortunately, I had to experience, but I was so happy to get into my infusion center. And when I told them, they were like, I believe that happened to you. And just really, they made up for it by going above and beyond anything that I would have expected during this time.

 

Jessica Walker 

I'm really appreciate you sharing that too. Because I think it's important for us to remember and I know that it's easier to understand and to to know, as you go through the process more and get to know more doctors and get to know, a broader range of people who are helping you in that in the medical field. But I think we think that all doctors have the answer. And they all have the same answer just because their doctors, like they know what's going on, I don't really know what's going on. I'm not a doctor. So we listen to them. And it's it really, they are people and they make mistakes, and it is very possible that one, even if they have the same opinion, you could just have a better fit with one and, and you seeking out the team that you needed. That's just I really appreciate you bringing that up. Because I know that that's something that people are sometimes nervous to do. Like, they don't want to offend a doctor or they don't want to, you know, you know what I mean? Like, it's, it's so important to find that right fit.

 

Emily Epperson 

Well, you don't want to offend anyone who, especially when they're, you know, drawing your blood and you think, Okay, well, I don't want to, you know, make anybody mad. But at that point, I, the the pieces that are referenced, I knew those weren't my team, I knew I had to step up and say something or have, you know, my boyfriend would when he was able to come, he would leave and go in the hallway and talk one on one with him, you know about certain things, and you just have to have, and that's what I learned in the hospital, I can say all I want. But if I don't have at least one other person helping me advocate and manage this journey, like it was, it would have been very difficult. My My heart goes out to anybody that listens to this that had to do it alone, because I've read just too many stories of relationships not working out, or, you know, they didn't have anybody or they were distant from their family. And they were in the middle for, you know, months on end by themselves. And I like that, it just totally breaks my soul. Because I can't imagine doing any part of my journey by myself,

 

Jessica Walker 

you know, what you need, and you know how to ask for it. And that's so important. And through those little examples. I think that was that was amazing, too, for probably a lot of people to hear. And so I know that you've connected with the cancer community through I mean, through through social media platforms and things. And I I'm just wondering what that benefit has been for you. Why was it important for you to seek out connection? Cuz I know you mentioned you didn't have anyone in your family who had cancer, you did have your co workers, sorry, your boss who had gone through it, but why did you end up seeking other cancer survivors or people in the cancer community for support and connection,

 

Emily Epperson 

I definitely saw them for connection because I just wanted to know, even though I knew that in reality that we weren't alone, it's so nice to just have someone to talk about that with. And so because of, you know, the pandemic, at that time, shut all the support groups down, you know, there was nothing happening at oncology centers where they were allowing, you know, groups of people to get in meet and talk. And then, of course, I am a young adult. And so I was the baby of my oncology, infusion center. So I really didn't have anybody that could resonate with. And so I started just trying to find things on Instagram, through hashtags of my diagnosis. And so I might find a page here and a page there. And that leads me to your page and then your page might lead me to another page. And so I just kept doing that until I just could maybe find two people now watch the stories I will look at comments and on one in particular called the cancer patient on a repost, you know dmws and I was about to go through intrathecal and I had no idea what to expect from that. So I messaged them and said Hey, can you put this out there? stage four, non Hodgkins lymphoma diffuse rb, so 31 I'm doing it, you know, I just kind of put it out there like, Hey, what's what is this like, and I had so many messages of like, hey, added interest Ico, I did it. And it was just so great that people found me, you know, and they and there was there's groups on Instagram, where they're talking in DMS, and one girl found me was like, I think that you're a perfect fit for our two groups. So shout out to the lymphomas and the Don't rush cancer girls, because without them, I would have felt completely alone. In the sense of like, it's just me and my boyfriend and the baby trying to navigate this cancer room allowed me to say, Oh, you've done this. Okay, well, what did you ask your doctor? Or we would send pictures and talk like, Hey, here's my hair growth. What do you guys yeah, just so that you didn't feel so alone? Or it's like, Hey, you know, you know, and some people in our group have relapse, and you know, being able to know that, hey, we got you. And we're there for you. And just to have somebody that, you know, you can message and say, did you experience this? You know, I've been talking to several them about chemo brain and like, how we just don't talk about that enough. But, um, having that support was like, okay, like, because I was hearing in the hospital and the infusion center, you're out in you and Tommy can attest to this. You're too young to have cancer. Yeah, you have a cancer that's typically found in older people. And so I was like, Mr. Really like a statistic, but I'm not I was very common. And I was, I was able to find a lot of individuals, at least a handful of individuals with a very similar diagnosis to mine. And it just felt like comforting to know that,okay, they're in they're ahead of me in the process. So one of the girls recently got her port out. And so I'm like, Okay, one day, that will be me, like, I will get my port out. And I'm able to share that. So it just allowed us to not feel alone, even though it is all you know, across the digital world. It really, it really just kind of put a little kind of filled up a void, I guess you could say,

 

Jessica Walker 

such a great takeaway. And it's also I think, really powerful to hear that you can find that connection on social media and through the internet, such a powerful connecting tool, whether you have that support in real life, like maybe, like you'd mentioned, like maybe people who don't have a partner to go through this with or aren't close with their family, or maybe just live farther away, that there is an incredible, real connection that you can get through these platforms. And it's, I think it's, I know, there's no good time to go through cancer, but I can't imagine navigating this without that tool.

 

Emily Epperson 

Yeah,no, I completely agree. It's just, you know, there's a lot of stuff that can be on social media, but it really just helped me find the people that I can connect with. And just learn more about what I was going through and know that like me having this symptom, or still feeling this, you know, months later, like I'm totally normal.

 

Jessica Walker 

I love that. Oh, love it. Emily, this was such a great conversation, I am going to be linking Emily's Instagram, if you want to connect with her more, or reach out to her if you have questions about anything she shared. And I just really appreciate you taking the time to have this conversation. It's this is this has been awesome.

 

Emily Epperson 

Thank you just so much for having me. I was so excited to just give you my information for a book. And then when my name in that book, and I was like I'm in there like that. And then being able to reach out to you and then beyond this podcast. It's just been an experience for me to help me connect more to the community. But also, I hope that something that I've said can help at least one person and that that makes my world a lot better if I can help at least one person.

 

Jessica Walker 

I'm sure you did. I mean, you helped me I definitely am going to be hanging on to some of the things you said today was it was awesome, and I really appreciate it. And we will talk to you all next week. Thanks, Emily. All right. Thank you.


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