In this episode of Before Our Visit Ends, we sit down with yoga teacher and mom Emily, who shares her incredible story of facing a Hodgkin's lymphoma recurrence seven years after being declared in remission. Emily’s journey sheds light on the unique challenges of a young adult cancer diagnosis, the difficult decisions that come with aggressive treatment, and the profound power of self-advocacy. How do you find the strength to fight cancer a second time, and how does it reshape your entire outlook on life, family, and what it means to be healthy?
Emily's story is a powerful testament to resilience. Initially diagnosed with Hodgkin's lymphoma at just 18 years old, she went through treatment and embraced life, believing cancer was in her past. Seven years later, living in Hawaii and newly engaged, subtle but persistent symptoms led her to suspect something was wrong. This episode details the critical moments of advocating for yourself as a cancer patient, as Emily had to push for the scans that would ultimately confirm a "bulky disease" Hodgkin's lymphoma recurrence. We explore the emotional and physical toll of a more aggressive treatment plan, including 12 rounds of ABVD chemotherapy and radiation, and discuss the long-term side effects of cancer treatment that she still monitors today. A central theme of our conversation is the crucial decision-making around fertility after chemotherapy, a concern that is top-of-mind for many young patients. Through it all, Emily provides an honest look at life after cancer, sharing how her experiences have influenced her approach to health, motherhood, and her career as a movement specialist.
Learn More From Our Guest / Episode Resources:
Camp Mak-A-Dream (Free camp for young adult cancer survivors)
First Descents (Free adventure travel for young adults with cancer)
Introduction
Eunice: Hi, I'm Eunice. Welcome to Before Our Visit Ends, a space where we take a moment to get to know the whole person beyond their cancer diagnosis. Along the way, we'll gain meaningful insights on living a life that is not defined by cancer. These stories are sometimes heavy, sometimes unexpectedly light, but always honest.
During this podcast, my guests and I will be sharing personal experiences and discussing medical information. That said, the information we share is based on our own lived experiences, perspectives, and personal understanding. This podcast is not intended to replace medical advice. Please consult your own healthcare provider or licensed practitioner with any questions or concerns about your diagnosis or care. Before our visit ends, it's not responsible for any outcomes related to information shared in this podcast. Each episode is shared with the hope that someone listening might feel seen, better understood, or more informed. And with that, let's begin today's episode. Today, we have Emily Peretti, who is going to tell us her story with cancer. Emily, thank you so much for joining the podcast today. How are you?
Emily: Thank you for having me. I'm doing well. I'm doing really well.
Eunice: So before we get started into the medical parts of the conversation, I always really love to hear about you, how life looks like in general, day to day, as a partner, as maybe a wife, as what type of work you're doing. So really excited to hear about your background.
Meet Emily: Yoga Teacher, Movement Specialist, and Mom
Emily: To start right now, my main role in life is I'm a mom of two. My daughter is here with me. She's 18 months. Her name is River. And my son is a little over three. His name is Noah. I'm married to my high school sweetheart. And we've gone through a lot together, just life things.
We've lived in Hawaii together. So we actually were there for four years. You got a job out there. We moved there. We spent four years right after college and we got engaged out there. And then we got married at home. Once we moved back to New Jersey, this is where we live. This is our home where all of our family lives as well.
And then for work, my job right now, I am a yoga teacher and movement specialist. I got my 200-hour yoga teacher certification. I completed it in 2019 and I started teaching right away. I was even teaching a little bit before I completed the certification because I taught dance and movement since I was basically 18 years old. And I was a dancer my whole life throughout college. So I just had a lot of background and a lot of knowledge about how to move the body.
So after I got my 200-hour yoga certification, I also went into different certifications. I became certified in aerial yoga, and I am the lead aerial yoga teacher trainer at my studio. We've had a few teacher trainings. So now I have teachers under me. And then I also am one of the co-leads for the teacher trainings at MyOPA Studio, the studio that is very close to my home.
I'm also certified in prenatal and postnatal yoga and movement. And I teach a lot of that along with some mommy and me classes, which is for moms to recover postpartum. But it's also to incorporate the babies. So moms don't have to find a babysitter. Other than that, I am certified in bar, which is very similar to dance. And it's more of a full body workout, upper body, core, lower body. And I'm in the process of getting my performer Pilates certification. So that's actually happening this next month. And I'm going to start teaching at a brand new studio in September in Highland Park, New Jersey.
Eunice: You have a lot of followers on Instagram. Is that true? Would you consider yourself? Because it's really influential. I see a lot of the things that you do. Are you also an influencer in that respect as well? Or do you consider yourself an influencer?
Emily: I don't consider myself a big influencer, but I've done smaller things before. So you could maybe say I'm a micro-influencer. I've partnered with brands in the past. I really just try and promote what I'm doing to try and get others to just join the fun and move their bodies in all my classes because it is so important to move.
And I think all of my classes offer something different for whatever stage of life you're in. If you're expecting, if you're pregnant, you can take my prenatal classes. And I also offer some on-demand classes as well, which I started that last year. I would love to grow that platform on my website within the next year or so to add some more to that, not just prenatal on-demand, but specific classes for others that can benefit if they can't make it in person. I wouldn't say I have a large following, but I have a following.
And it's mostly people I know and then people that have just connected with me over the years. And we've met through Instagram, through social media. I think social media is great if you use it correctly. If you're going through something in life, you can find people that are also going through that same thing in life. And you can meet and chat and just get to know one another through this little app that is so powerful.
So as long as you're using it the right way, finding things that are helpful for you and whatever you're going through in your life right now. So I try and put stuff out there for other people to just get some resources on how to move their bodies correctly. If they just had a baby, how to engage the core properly. So that's what I do. And I also just share about life, real life, kids, being a mom, and things like that.
Eunice: I always love to hear my guest lives. Before our visit ends, it's supposed to be the concept that you come into the office, we see you for your cancer diagnosis, but what is this dynamic life that you're living outside of your cancer diagnosis? Which is a good segue into getting into, for you, your diagnosis. When did that happen? What prompted you to get tested? And really, how was it processing the news that you were diagnosed with cancer?
An Unexpected Diagnosis: Young Adult Cancer at Age 18
Emily: It takes me way back. So I'm 33 years old right now. I was initially diagnosed at age 18 when I was a senior in high school. So I do remember it like it was yesterday, just the whole process being diagnosed. I was a dancer and one day at my dance studio, I think we had a dress rehearsal. I noticed a lump in my collarbone area. It was a golf ball size, hard lump that I had noticed before just there, not hurting, but just there. So I showed my mom at the dress rehearsal and she was worried right away. I had no idea what it could be. I was a teenager.
So she said, I'll call the doctor tomorrow to make an appointment so we could get it checked out. A few days later, I went to my pediatrician, and right away, she looked worried. She said, we could try and do tests here. We can take some blood, but honestly, it's not going to come back for a couple of days. I recommend you guys going to the emergency room over at the hospital, which was 10 minutes away. I'll give them a call. I'll let them know you're coming. There's a great physician there. There's a great doctor there that can take you in, that can start tests and everything so that we can get an answer to what this could be. Right away, she knew what it could be. She didn't say it, but that got me and my mom thinking and scared in the car on the way there, the 10-minute drive to the hospital, just the panic that my mom was experiencing. And me in the passenger seat. It was very scary.
So we got to the emergency room and right away, they did blood work. I went in for a CT scan, a PET scan. And even right before we got the results back, the doctors came in and said, we think that this is Hodgkin's lymphoma, which is a type of blood cancer. No need to be worried. When they said that, we were automatically in shock. How could this happen?
So they reassured us that it was going to be okay. Everything was going to be okay. Hodgkin's lymphoma is the good type of cancer. We have a plan moving forward. If this is what it is, you're in good hands. I stayed over at the hospital. They had me inpatient. So they moved me upstairs and they did a biopsy of it to confirm that it was Hodgkin's lymphoma, stage, I believe it was stage two. So in my neck and my chest, stage two A. I wasn't experiencing any other symptoms besides the physical lymph node swelling. Right away, just all the questions in our head, how could this happen? What did we do wrong to make this happen? It's a lot.
So that was when I was initially diagnosed. And then fast forward through the treatment process, they put me in a clinical trial. It was a three-month clinical trial to only receive three rounds of chemotherapy. So I qualified. Basically, to qualify, you needed to be between the ages, I think, 18 and 30, young, in good shape, physically active, and no other health issues. So I qualified. We did three rounds of chemotherapy. For Hodgkin's lymphoma, they normally give you ABVD. So for this, they dropped the B, which is bleomycin, which damages B lungs. And they just did three rounds of ABV. And after three rounds, I was in complete remission. Let that go. I was like, okay, I want to be a regular 18-year-old going into college. Let me live my life now.
Eunice: I was going to ask you, how is it trying to live your life, being 18, your friends are going through their lives thinking about college, and you're going through a cancer diagnosis?
Emily: It was pretty tough because I obviously, well, not everybody does, but I lost my hair. So my hair fell out during that process. I just decided to shave it because it was just coming out in clumps everywhere. The eyebrows, the eyelashes came out. So looking in the mirror I did not feel like myself. It was hard. It was hard, but I had a lot of support and my friends were amazing friends. They came to visit me at treatment in the hospital. So I had a really good experience that time during my first time of having Hodgkin's lymphoma.
A Surprising Hodgkin's Lymphoma Recurrence Seven Years Later
Emily: I say that because I want to move forward seven years after that. I had a recurrence. They say that if you're going to experience a recurrence, most of the time it's going to be in the first five years after you reach remission. So my recurrence was seven years later. They couldn't believe it. They're like, oh my gosh, this is strange that maybe it was there. Maybe it was there for a few years, just slow growing, and you didn't realize it until year seven after. So I was 25 years old.
Eunice: Were you being monitored after the remission, like on a consistent basis?
Emily: Yeah, yeah. I would go for my yearly checkups. They dropped scans. So we only did blood work. So my blood work was completely fine. During my relapse, I was actually living in Hawaii, like I said, before my husband and I moved out there when we were 22. So I stayed in Hawaii to get treatment out there because I was just trusting the universe that everything was going to be fine. I did it once. I could do it again. It'll work out.
So the doctors out there were wonderful. They worked with my previous oncologist who happened to be a pediatric oncologist here in New Jersey. My oncologist in Hawaii was amazing. And they communicated. She'd come up with a plan. It really worked out.
That second time, I needed more aggressive treatment. It was a little bit more aggressive that time. So my mass in my chest was 10 centimeters. There were more lymph nodes that lit up in the PET scan. So it was considered bulky disease, Hodgkin's lymphoma bulky, because the mass was 10 centimeters pressing into my heart and in my lungs.
So they did give me the full ABVD that patients with Hodgkin's normally get. I did 12 rounds of that. So we did the full thing that time to make sure it would go away. And they also added in radiation. So the tumor board saw my case and said, we think that radiation would be good. I said, all right, let's give it a try. I've got nothing to lose here. I don't want this thing to come back. I want it to be gone forever. So we did 14 rounds of radiation to the neck and chest.
Recognizing Relapse Symptoms and Advocating for a Diagnosis
Eunice: The second time, because it was bulky, did you have symptoms? And was there something that told you, okay, something is wrong? And did the symptoms last for a specific amount of time where you were, at some point you said, I think something is wrong here.
Emily: Yeah. I was very tired. I was feeling a lot of fatigue in general. But the main thing was I was very active. I ran a lot and I worked out a lot. At the time, I did CrossFit classes in our community that we lived in Hawaii. We had this little gym and it was so much fun. So when I was breathing, taking a full breath, something was stopping it, stopping me from taking a full breath. I could feel pressure in my chest. So that was the mean symptom that I knew. I'm like, something isn't right.
Actually, they really didn't believe that it could be a relapse. And I almost demanded, I sort of demanded to get a PET scan. I talked to my oncologist at home. I said, I just want to be sure. I don't think this is right. I don't feel good right now. I think we need to get it checked and just make sure. So he said, ask them to do a PET scan and the PET scan lit up, which means there's cancer, there's disease.
Advocating for myself that time was really important because I was seeing a whole new team of healthcare providers who didn't know me and just knowing my body was really important. Just knowing, OK, something isn't right right now. Let me get those checked out and fighting for me to move forward and keep getting checks because my blood work came back pretty normal. So the PET scan is really what told us, yeah, you relapsed.
That's scary to me that some people do wait longer, and then it turns into stage three, stage four. And then with tumors, like what you were saying before, what you're experienced in, it could become metastatic at that point. It can spread to your bones and your brain and other areas, other organs. So it's really scary. So just knowing your body and making that initial appointment is scary. It really is. But it's important to get it done sooner to make sure. And if it is something, get it treated before it gets even worse.
Navigating Aggressive Treatment and Long-Term Side Effects
Eunice: That's really great advice. How was radiation this time? Because now you had a much more intensive treatment regimen on top of it with radiation. Was that a lot for you? And do you still have any side effects from the radiation?
Emily: Radiation was okay. There weren't really any short-term side effects. So I went in every day for 14 days straight, Monday through Friday. So it was like three weeks. The sessions were maybe about 20 to 25 minutes. I just laid there. It's just like a scan. You lay in the machine and it zaps you, but you don't feel anything.
So I do think the one side effect short-term was I felt tired. I had fatigue. But other than that, I didn't experience nausea like the chemo. The chemo was a lot more intense in the moment, short term. But the radiation, they prepped me for possible long-term side effects. So damage to my heart was the main one. So I get echoes every two years to follow up. And right now my heart is good. So we just have to keep checking and making sure that there was no damage done. Yeah, radiation really wasn't bad. It was just going every single day was a little bit exhausting. But chemo was a little bit more spread out like every three weeks or so. But radiation was commitment. Short term side effects, I didn't really have any aside from the slight fatigue.
Eunice: Makes sense. How was it for your husband? You were high school sweethearts, right? So he was present when you were 18 and diagnosed and present again. How was it for him going through the experience with you?
The Caregiver’s Journey: Supporting a Loved One Through Cancer
Emily: Being a caregiver is sometimes harder than being the actual patient because he was experiencing it and he couldn't feel what I was feeling. He was going through all the emotions. And I say this more, this was more the second time because we were living together, we were engaged. So obviously there was more of a commitment in our relationship then. And we had just started dating the first time, but he stayed with me, which was good. And he was there for me. He visited me in the hospital. He came over when I was home recovering to bring me whatever I wanted, smoothies, milkshakes, whatever it was that I wanted, he would come over. So he was such a great support.
I would say more the second time. It was a lot for him. I almost felt bad, felt guilty myself because he had to go through it with me. He had to come with me to my treatments. We had some other people that we trusted to come with me and be with me if he couldn't take off of work or something like that. So, yeah, being a caregiver is extremely hard emotionally because you're also there making decisions with your loved one on, is this the right thing to do? Do we want to get a second opinion? And then the whole decision of should we stay here in Hawaii or should we move back home to be closer to family? That was a lot for us to decide. He was absolutely amazing, which is why I married him and we have two kids together. So, he's truly the best.
Eunice: And one of the things that's hard for caregivers sometimes is, it's not their body, right? So they're helping you make the decisions, but at the end of the day, you're the one that's feeling the physical effects of the treatment of the cancer. And so it's always just so hard for them. They want to be there to support you. But then when you're making the decision at the end of the day, it's your body, but it affects them as well. The initial diagnosis, you qualified for the clinical trial. This was the treatment for the recurrence. Did you think about different options? Did you ask different questions? Is this the best treatment for me? Are there questions that, for our listeners when you are making these decisions that you would say these are some important questions to ask?
Emily: We had a lot of questions the second time because, obviously the main question was, how did this come back? They really couldn't give an answer for that. And I understand. It could have been I wasn't given enough treatment the first time and it was very micro inside my body, still just growing very slowly those seven years. It's funny that none of my blood work picked up that something was wrong until I felt those main symptoms of, OK, I can't breathe. I can't take a full breath.
But, yeah, we had a lot of questions. We felt with the oncologist that I chose. I did a lot of research and we asked people in our community, our neighbors, the people that we worked with, where do you recommend to find a good oncologist? What cancer center? What hospital? Is there a specific oncologist that you recommend? So we found my oncologist out there who was great. He was very similar to my oncologist here in New Jersey, which I like, just very straight to the point. And his nurses were wonderful. You spend more time with the nurses than the actual oncologist. But really, in the initial appointments, our main question and concern was fertility.
Making Critical Decisions: Fertility Preservation Before Chemotherapy
Wondering, am I going to be able to have kids after this, having more chemotherapy? I did not do IVF egg retrieval before my first round when I was 18. We didn't even think about that at the time because it was so minimal treatment that I was receiving. So this second time when I was 25, we asked the question, do you recommend? And they said, we don't know who's going to be fertile and who's not going to be fertile after this. So we would suggest if you want to have kids to go through the process. So that was our one thing that we decided to do.
It's actually we didn't need to use our frozen eggs to have our two babies, which is amazing. So we went through the process because I would have regretted not doing it if I happened to be infertile after chemotherapy and radiation, but it's more the chemo that would have affected it. Yeah, these two, my two kids, were conceived naturally without IVF. So I was really happy about that.
Eunice: Did you feel like during treatment, were there resources that you and your husband maybe found really helpful that you would maybe recommend to listeners? Maybe if it was the, they had a nutritionist and any resources that you thought was so helpful for you?
Finding Support: Resources, Communities, and Cancer Camps
Emily: Yes, we did speak with a nutritionist and she just gave basic recommendations on foods that will be good to eat, what not to eat, like processed foods. But looking back on it, I would have loved a little bit more on also products, what ingredients and products to maybe stay away from, to eliminate toxins in the home. But we did meet with a nutritionist who is very helpful.
Speaking in terms of other types of support, the social workers were amazing. They put us in contact with different organizations to apply for grants, to apply for financial assistance. So we did that. We took advantage of a lot of different resources. And there was a foundation when I was in the pediatric unit that came by every time I was there. And they were so giving. There's so many donors that give to this foundation to help families with kids that are going through cancer treatments because it's just so much, not only financially but in so many other ways. To give that child normal experiences. So they gifted me concert tickets with my to go with my friends to kind of celebrate the end of treatment, things like that. It was very nice. So there were so many things that were given to us and I think it's amazing that there are so many foundations and resources out there that are there to help. You just have to look and ask and take advantage.
And then, yeah, there were support groups online, Facebook support groups that were so extremely helpful, specific to my type of cancer, young adult Hodgkin's lymphoma group. That's what it was. Yes. So I'm still in it to this day. And if I can contribute to something, I will if I see it, if I have time, of course. But the different groups, the different pages on social media that are there to help, to give advice, tips. It's just so wonderful. There is so much now with the technology that we have.
Eunice: Is there a group that you would recommend for someone who has Hodgkin's lymphoma that you are part of even on Facebook?
Emily: Oh, yes. So it's actually called and you can join it. You just have to answer the questions and join the group. But if anybody here is listening and has Hodgkin's lymphoma, the group is called My Badass Lymphomy Family. It's a very helpful support group that I enjoyed being a part of. And everybody is so similar in the group. We're just there to help one another. If we're going through something, you ask a question, if you're experiencing a recurrence, anything.
And then there was a camp that I went to the first two years after my first time going through treatment. It was in Montana called Camp Mak-A-Dream. And it's for young adult cancer survivors. And if you're still in treatment, you can go too. That's just a wonderful place to meet others that are going through any type of cancer treatment. So, It can be Hodgkin's lymphoma or leukemia or anything.
Eunice: And is it free?
Emily: It's free.
Eunice: That's awesome. Thank you so much for sharing.
Emily: Yeah, there's another camp experience like that. I never went, but I've seen a lot of my friends go to it. It's First Descents. It's a week-long. You can choose different activities to do. Hiking, kayaking, you meet people. There's support group sessions. And it's really cool. So, yeah, I've heard great things about that one.
Eunice: That's awesome. Thank you for sharing these. I think we're coming up on the end of our visit, but I'm curious because for you, you've gone through the diagnosis, you've gone through treatment, you have your beautiful family, you have your two kids. Has going through the cancer diagnosis changed your outlook on life? Do you feel like you're maybe take more appreciative of life a little bit more? Do you feel like you live your life a little bit differently?
Life After Cancer: A New Perspective on Health and Happiness
Emily: Now even after having kids too, I'm just like, life is too short. Life is extremely short. So whatever you're going through in life, you just need to do what makes you happy. For me, after having two kids, I actually left my full-time job to pursue what I'm doing now and it's just so fulfilling. And it's allowing me to make my own schedule, to choose the times that work best for me and my kids that I'm teaching because my kids are the most important thing in my life right now. So yeah, just choosing what's going to work best for me, my family, my health as well, and learning to say no to things that really don't fit into my life.
And even after going through an experience like cancer, you just don't want any negativity in your life because any type of stress that you put into your body is going to affect your health. So I try not to stress about little things anymore. Even if the house is messy. I used to stress and get overwhelmed. Now I just try and let it go. If it's messy and I don't have time to clean it, it's OK. It'll get done later.
And just choosing to do more of what makes me happy and what is good for me, my health, my kids. I don't want anybody to have to go through cancer treatments. So I've actually changed and I'm constantly learning new things along the years, every year, is just how to live a healthier life. So how to eliminate toxic ingredients from our foods, like going to the grocery store and just looking at the label and figuring out, okay, is this good for me or is this putting chemicals in my body that I don't need? And we can only do so much. So obviously, if we're out and about at parties on vacation, I'm gonna allow my kids to have a little sweet every once in a while. But 80% of the time I try and do my best with cooking all-natural ingredients, vegetables, putting our health first and our happiness as well.
Eunice: That's awesome. And a lot of the things that you said I think can apply to anyone. I think it's almost a lot of it what you're saying is what you're doing for yourself. But what I was going to ask you is if you have any advice. And really what you're saying that you're doing, I think, will resonate with other folks as well. But any advice that you have in general, whether medical, what questions people should ask or just reiterating even what you said about for someone who's gone through cancer, what it looks like after going through treatment. If you have just any advice for our listeners that you would want to leave us with.
Final Advice: “Know Your Body and Be Your Own Advocate”
Emily: Know your body. Be so aware of your body. That if something little is bothering you, go get it checked. And most of the time, it's nothing. But we just want to make sure we catch these things early before it's too late, before it gets worse. That could even go into pregnancy, too. Just knowing your body when you're pregnant, knowing what movements work, what's going to be good for you, the baby, your body, your pelvic floor, to be without pain. Because I have a lot of students that are in pain during pregnancy. And I didn't really experience that because I was certified in prenatal yoga. So I knew what to do.
But just in general, in life, know your body, use your resources, free resources. There's so many online. Get the acupuncture, get the massages. But you can also do such similar things at home on your own that are going to be so good for you, your body, your mind, your soul. So yeah, just be your own advocate. Advocate for yourself. And if something doesn't feel right, if the doctor says you're fine by seeing your blood work, maybe just fight for it if you know something is not right.
Eunice: I love that message. Be your own advocate. I really love it. So thank you so much Emily. This was a really great time talking with you. I think you've given us really great nuggets, some really great resources and I think your story will inspire other people. So thank you.
Emily: Thank you Eunice, this was so fun.
Eunice: Although this visit has ended, I hope this story stays with you and you can share it with someone who might need it. Until next time, take care.
