MOUNTAINSIDE, NJ – “Hi, I’m Lia. I have Hodgkin’s lymphoma,” Lia Sartorio wrote in her blog, “but Hodgkin’s lymphoma does not have me.”
Sartorio, 20, was diagnosed with Stage 4 Nodular Sclerosis Hodgkin Lymphoma (NSCHL) on May 6, 2019. Today, she’s cancer free.
Sartorio’s blog, fuhodgkins.com, gives readers an intimate look at her journey. On the blog, she shares her innermost thoughts, feelings, and experiences with the world through posts, video updates, and photos at every stage.
“I love writing, and I’ve always loved to write, but I never really knew what to write about until this happened to me,” Sartorio told TAPinto. “I can explain myself, I can portray myself, and people can really get to know me through this.”
“I was thinking, ‘What would I want as a cancer patient? What would I want a girl in ten years going through Hodgkin’s Lymphoma treatment to be able to hear and see?’” Sartorio said. “I figured that a blog would be a great idea, just so I could document what was going on. […] I wish I had something like this to look to, to give me comfort and support.”
Sartorio explained that, since her diagnosis, her priorities have completely shifted. She said that considering both the positive and negative outcomes of her journey gives her the strength she needs.
“Positive aspects […] have actually come out of this that will shape my life for the better going forward,” Sartorio said. “I think it can be really […] inspirational for people to see that and hopefully be less scared if they ever have to endure something like cancer in the future.”
“I was swarmed with messages as soon as I was diagnosed, and people were constantly asking how I was doing,” Satrorio said, surprised by the amount of people who reached out after reading her blog. “I did not think people would actually read this. This was just intended for my extended family who was texting me a lot.”
“A lot of random people have reached out, but they’ve all touched me in different ways,” she said, including cancer patients, doctors, nurses, and even a book publisher.
Sartorio says her parents and her boyfriend Brian have been major parts of her support system.
“My parents have been the most supportive, grounding people I could ever ask for thorough this whole experience,” she said. “I really owe a lot to my parents. I really don’t know what I would do without them.”
“[Brian] loves me more because of what I’ve been through,” she said. “And I’ve heard some horror stories of people who have broken up with someone going through chemo [or] people who run at the face of challenges. But he really ran towards me in this situation, and he’s been here with me every single day.”
Among her extended family, Sartorio says her Aunt Kathy, Uncle John, and cousins Colleen and Mary have been sources of comfort and strength.
“They always show me what it is to fight,” she said. “They really taught me how to be a fighter.”
Sartorio’s cousin Colleen was diagnosed with breast cancer about a year ago and is currently in remission.
“I was watching her go through this struggle,” Sartorio said, thinking back to when her cousin was first diagnosed, “and my heart broke for her. She handled her diagnosis with such grace, and poise, and strength.”
“A lot of people have paved the way for me, but she’s really been my guiding force throughout this. Because I’ve seen her strength, and I’ve fed off of it,” she added. “She really understands the emotional struggles I go through.”
Aside from family, Sartorio attends several hospital classes and online support groups, which she says makes her feel less alone.
“It is my hope that people don’t feel like they’re going through this alone. Because they’re not,” Sartorio said. “I’ve met so many wonderful people through these classes, and I feel like there are more people than you know that are going through cancer. I feel like it’s touched everyone’s lives. So, I don’t understand why people can’t be comfortable talking about it. I feel like it wouldn’t make it seem like such a dark, ominous thing.”
Another unique service offered by Memorial Sloan Kettering Cancer Center has proven beneficial for Sartorio. She explained that the hospital offers an app that matches people with the same diagnosis being treated at the hospital so that they can message and connect with one another if they are interested.
Sartorio was matched with a girl who is the same age and same year of college who was diagnosed with Hodgkin’s Lymphoma around the same time. She says she and the girl have since met in person and have grown close.
“She’s helped me in ways that I never thought possible,” Sartorio said. “[She has been] the most grounding, comforting force throughout this experience. […] She’s just an incredible person, she’s helped me so much, and we’ve helped each other throughout this process.”
Dispelling the Myths
“People normally when they see me, unless they know me, they don’t assume that I am going through what I am going through,” Sartorio said, explaining that people are often surprised to learn that she has been diagnosed with cancer. “And when they find out, they are in shock. I wish that wasn’t the case, because everyone among us is going through something.”
Sartorio says posting pictures on her blog helps her show readers that cancer does not define her.
“I love posting the pictures in my gallery, because I want people to see that just because you have cancer doesn’t mean you’re lying in the bed all day,” she said. “I go to the beach, I go outside, I see my friends and family. A lot of people think that you’re just in a dark closet mourning your life away. But most people that I’ve talked to are not doing that at all.”
Sartorio wants readers to understand that everyone’s cancer experience is unique. In her blog, she is sharing her perspective in hopes of making Hodgkin’s disease less of a mystery.
“I’d never heard of Hodgkin’s before I had it,” she said. “I feel like it’s important that people are bringing these [diseases] to light.”
Bringing Hodgkin’s disease to light, Sartorio says, will give people a greater insight into how to talk to people about the disease. Sartorio says several people have approached her to offer help, but they are unsure how best to do so.
“People don’t know how to approach me, because they don’t know how to talk about it,” Sartorio said. “I’d love people to say ‘I’m here for you, if there’s anything you need please let me know, if there’s any way I can help you just say the word.’”
“Those are the best messages, because then the ball’s in my court to tell people what I need or what’s going on,” she added.
Sartorio also hopes to shed light on the chemotherapy process and its associated side effects, including hair loss.
As Sartorio explains, chemotherapy is different for every cancer, and every person, and there are thousands of different drugs that can be used called “chemo.” Sartorio’s oncologist told her one of the drugs used in her chemotherapy would almost certainly cause hair loss. She then buzzed her hair, only to find that it never ended up falling out.
“I’m still happy I buzzed my hair before my treatment started, I feel like it taught me a lot of important lessons that I wouldn’t have learned otherwise,” Sartorio said.
At first, Sartorio wore “chemo caps” and “chemo head wraps,” but has not worn these in over a month, saying she wants to embrace her short hair.
“I want to normalize this, and I want to feel normal myself,” she said. “I feel good with my hair like this, because it’s always like this, and it’s helped me accept myself.”
Looking Toward the Future
Sartorio’s PET Scan, which determines whether or not she is cancer free, came back negative for Hodgkin’s Lymphoma on July 10, after she had undergone four of twelve required chemotherapy treatments. Since then, she has been receiving the remaining treatments every two weeks, and has received nine treatments as of this writing. She says her treatments are scheduled to end in mid-October, shortly before her 21st birthday.
That being said, Sartorio stresses that her journey is far from over.
“People may assume that once you are cancer-free, all is well. This could not be farther from the truth,” she wrote in her blog. “Cancer-free does not mean pain-free. It does not mean worry-free. It certainly does not mean stress-free. It means that a new journey is taking form; a journey that might take the rest of your life to accept.”
“Every day I face new challenges. I will do everything in my power to get through these next 3 months and then face a lifetime of new challenges,” she added. “One thing that I am fairly certain of is that my best is yet to come.”
Despite these challenges, Sartorio remains hopeful and committed to her goals. This fall, she will return to Kean University, as a senior working toward a Bachelor’s degree in psychology.
Sartorio says her journey is also an influence for her future career.
“My main goal, one day, is to create a nonprofit organization for people going through Hodgkin’s. I’d love to make some kind of camp for Hodgkin’s young adults,” Sartorio said. “I just have so many ideas, and also to bring awareness to Hodgkin’s because it is such a rare cancer. […] I’d love to make some kind of organization and program that could help people. I feel like that would be the most fulfilling.”
“It’s really going to be shaping my future, and shaping how I want to help people,” Sartorio said of her disease and journey. “It has shifted my priorities to want to help people more.”
“Now, for the first time in my life, I feel empowered to do something about it,” she added. “Now I have more courage than ever to actually try.”
Ultimately, Sartorio’s blog has empowered her in ways she never thought possible.
“I just feel so proud of myself for posting this,” Sartorio said. “Every time I post, I feel so happy, because I just want to help people. […] I want people to feel comfort, and love, and to know that there is hope no matter what situation you are in.”
Sartorio hopes that sharing her advice, insight, and journey will help and benefit others in the years to come.
“I would love for people, if they’re ever struggling, to reach out to me,” she said, “because it’s really comforting to talk to someone who has gone through it.”
In one of her blog photos, Sartorio stands in her yard holding up a sign that says “Stay Gold.” She says this phrase is a guiding force for her as her journey continues.
“This phrase perfectly sums up how I feel right now,” she said. “I just felt like that phrase really empowered me.”
“I interpret it as, like, ‘stay young, stay youthful, stay yourself,’” she added. “I’m thriving, I’m beautiful, I’m strong, and I’m going to stay gold.”