“And if we can make someone feel less alone, count me in.” -Tori McGee, Lymphoma Survivor
“And for those of you who may be patients or caregivers or survivors...give yourself grace. ”
Witnessing the transformative power of resilience in the face of adversity is truly inspiring, and few embody this quality as fully and beautifully as Tori McGee. Despite being diagnosed with lymphoma at a young age, Tori has not only found the strength to persevere, but she has also become a beacon of hope and resilience for others facing their own battles. Her story is a testament to the indomitable human spirit and a reminder that even in our darkest moments, we are capable of incredible bravery and tenacity.
Tori has been vocal about her experience to encourage others to become more open about their struggles. She believes that by recognizing these shared experiences, we can find comfort and community in one another and that no one should suffer in silence. Her vision of a world where people are supported through difficult times is worth striving for, and her courage in speaking up is powerful and inspiring. This blog post will feature an inspiring interview with Tori McGee. She will share her story of being diagnosed with lymphoma as a young adult and how she overcame the challenges that came with it. Through this interview, we hope to spread Tori's message of resilience and encourage readers to be open about their struggles. We have included a full transcript of the interview below for your convenience.
“I think this is really important for the audience to understand is that it is just that. It’s a journey, and it doesn’t end, right? You get diagnosed, your journey begins...[and] it doesn’t end when the treatment ends. You go into remission. There’s a new normal and a new reality for your life. And it’s a part of your story.”
Interview Transcript
Lyndsay Springer: Hi, everyone. I'm Lyndsay Springer from the Chike Springer Foundation. Today, we have an amazing guest, Tori McGee. She is a two-time Hodgkin's lymphoma survivor. She is a mother to a one-year-old boy, Brixton. She is part of the adolescent and young adults community. She's a beautiful and strong woman of color, and she just celebrated her one-year rebirth from an autologous stem cell transfer. And that barely scratches the surface. Tori, we're so excited to have you talking to us to learn more about your story and spread awareness and hope. Welcome, Tori.
Tori McGee: Thank you. Thank you. Thank you so much. That's an amazing intro by the way. I'm like, what's left? What's left to talk about? Thank you so much for having me.
Lyndsay Springer: Oh, I thank you so much for coming. I know there's a ton to your story and lots to talk about. So, first of all, do you want to tell us a little bit about your story and what made you reach out to the Chike Springer Foundation?
Tori McGee: Absolutely. Absolutely. So you set it up quite nicely. I'll just give additional context. So I'm 35 years old. I reside in Atlanta, Georgia, and I have been...I was originally diagnosed in 2019 with stage four Hodgkin's lymphoma. I underwent treatment for about a year and had relapsed Hodgkin's lymphoma in the fall of 2021, shortly after the birth of my beautiful baby boy. And you mentioned I had to autologous stem cell transplant about a year ago. So I have scans coming up and hopeful that I'm back in remission or claiming it. But you know, more recently, I've just been looking for ways to spread my message and share my story and actually stumbled onto your Instagram page by happenstance. I was just going through some of the pages that I follow within the cancer community, like Chemo Diva's, Lymphoma Lady's, Cancer Actually Fucking Sucks. I love the title of the podcast is a bunch of different platforms and I stumbled on to your page, and it stopped me dead in my tracks, because, for the first time in a long time, I saw in the bio that your mission, right as a nonprofit organization that's dedicated to furthering the research for lymphoma, specifically for adolescents and young adults, for military and veterans and for people of color. And I went, you know, man, I'm at the cross-section of two out of the three cohorts. And I reached out to your team, and I said, Hey, I'm really interested in connecting. And I didn't know what capacity that I could help. But, you know, I said, hey, if there was interest in just sharing the story on your platform to help, help one person in your platform, I'd be more than happy. And so I slid into the DMs, and here we are.
Lyndsay Springer: Yes, you did. And I love that you said that, you know, what our mission was really drove you. You're free to be a spokesperson any time because we really love to highlight people like you who are younger, who fit those groups that we're going after, and to showcase that cancer can affect anyone. It doesn't matter where you come from or what you look like, and cancer does fucking suck.
Tori McGee: It sucks. And I also want to say that I went through your page, and I was super compelled by your story and your late husband's story, and the fact that you're continuing this work in his honor was just such a beautiful, beautiful, beautiful story to see. And kudos to you. Right? This is hard work, and it's emotional, and you have to relive a lot of emotions day in and day out. But the fact that you're doing this, in his honor, keeping his spirit alive, is a testament to you and a testament to the love that you two share. And I appreciate you for sharing that gift of his story with us. So thank you.
Lyndsay Springer: Oh, you are hitting a lot of things on right on the head. Yeah, I really... it is hard reliving the story. But really, as we spoke before, Chike really wanted this to be something positive. It couldn't just be his suffering or his, you know, his passing away. We had to remember him and use his stories as he wanted us to, to make it better. And we are all volunteer. No one gets paid, unfortunately, at the Chike Springer Foundation. So we really have a lot...a team that's just made of beautiful people who believe in our mission and who want to do exactly what you said. Help one person, help more than that. Obviously, that's our vision. But we're busy, and we know that if we can help one person, that's better than doing nothing, and to kind of letting it be that negative outcome that it, unfortunately, was for us.
Tori McGee: Yeah.
Lyndsay Springer: But switching gears, let's talk about how you came to your diagnosis or kind of what you noticed and why you went to the doctors.
Tori McGee: Sure. So I would say shortly after my 32nd birthday, I started to have this pesky cough, just a dry cough, and it wouldn't go away. And I'm not I never got sick. And it wasn't my first thought to go to the doctor. But what was happening was that all of these other signs and symptoms started to kick in. So I had night sweats, and sometimes I'd wake up in the middle of the night and be drenched. I was very, very fatigued. I would have, you know, go to bed. I'd wake up in the morning, get ready for work, and I would be so exhausted that I would get back in the bed and go back to sleep. I'm like, Let me take a power nap before I go to work. I'm just tired. I'm just tired. And I'd like take a nap. My skin would get really, really itchy and scratchy, and it felt like bugs were crawling all over my skin, which I later learned were like the lymphocytes in my bloodstream. I had lost a lot of weight, so I'm five-ten. Always been athletic. I carry weight well, just because I'm taller. But I had lost 30 pounds without really noticing. But my coworkers were stopping me and going, Hey girl, “oh, you look good, you been working out?” And I’m like, no, not really? And I did step on a scale. I just figured I had a high pace, fast pace, high visibility role, and I just chalked it up to, you know, I'm traveling. I'm not necessarily taking the greatest care of myself. And I stepped on the scale and realized I lost a lot of weight, 30 pounds. And so I said, uh oh, you know, something's going on. So all of this, while I'm having this cough was now it's been a couple of weeks in.
So I go to the doctor, and I tell them what I'm experiencing, and he's, you know, he's like, "Okay, well, you got a little thyroid fullness." Right, because he's looking at my neck at this point in time because I just look swollen. “You got a little thyroid fullness look, but I got to figure out what's going on with this cough,” so he sends me to get a chest X-ray. Get the chest X-ray done. He calls me the same day. He's like, "Hey, there's there's a tumor.” Well, he used mass, "There's a mass in your chest, and we got to get you in to get biopsied.” And at this point in time, I still wasn't really thinking cancer. I talked to my mom, and I was like, the doctor called. He said, there's like a mass there. And, you know, I didn't even think that cancer will be a part of my story or my reality. And of course, you know, she knows. She knows, right? Like, that's not normal. So I get the biopsy, and they confirm Hodgkin's lymphoma. And we start treatment shortly thereafter. And I go into remission, and I would say this is January of 2020. The treatment plan that I had for the first go around was something called a course called ABBD. And if there's anyone out there that's going through that, you can look it up. It's the standard course of care for first line of Hodgkin’s lymphoma, and I went into remission in January and found out that there was a potential for a relapse within a year of going into remission.
And so yeah yeah, the crazy I don't want to say crazy... but the scary part of it is that when I found out that there would be a potential for a relapse, I was newly pregnant, and I had conversations with the doctors, and they said, "Hey, listen, we see some activity on the PET scan”...at this point, I went in for my annual PET scan just so that they can say, okay, like cleared me to go and they said this, there's something going on. We don't really know. I wasn't symptomatic. I felt fine. I said, let's...ultimately did a wait-and-see approach. And I had doctors that were like, Hey, if this is a relapse like you might need to consider a termination of your pregnancy. It was like a very scary, very dramatic time in my life. And I, you know, I decided I'm going to move forward with my pregnancy. And lo and behold, about ten weeks postpartum, I had a lymph node in my neck that swelled, like swollen, on my right side, and I told my parents, I said, "I think we got a relapse. It's going to be okay at this point." I relocated from Jersey City to Atlanta, where I now reside. So I had a whole new team of doctors and, you know, just kind of starting over with a different team and a new treatment plan and hopes that this will eradicate the disease and I can move forward.
Lyndsay Springer: Oh, my gosh. Thank you so much for sharing the story. I, I have chills. There is so much of what you said that reminded me of Chike’s journey. But yet obviously different. Do you feel like as a young person when you were getting those symptoms, you were kind of like, Oh, I'm tired because I'm working hard, I'm just getting older, or like, I just have a sickness. Like it's nothing. And one of the things that we've we've talked about with some of the doctors that we work with is the fact that younger people often have higher tumor burden and higher or longer disease progression because of the fact that they don't go in right away because they're just like, Oh, I'm fine. I'm it's okay. And, you know, you're in that AYA population into your twenties to thirties. You know, you're not thinking cancer. You're not thinking anything like serious. So, you know, you kind of take those risks. But it is really important. We've had a couple of people that we've talked to and have showcased to really advocate for yourself. And when you do know that something is wrong or something doesn't feel right, to demand that you know that the blood work is done, that the scans that are appropriate are done, and to make sure that you're getting the most comprehensive care that you can, because doctors think the same thing. They think, oh, 30 year old healthy, you know, looks great, looks healthy, and there's not really a seriousness to it until something is found. What do you think people don't understand about the treatment journey from your perspective?
Tori McGee: Yeah, I, I think this is really important for the audience to understand is that it is just that. It's a journey, and it doesn't end, right? You get diagnosed, your journey begins. You start treatment, and whatever treatment that is for you, treatment ends. You go into remission. God willing, right? And hopefully, stay in remission. Long after the well-wishes are gone, right, long after the calls stop, and the text messages stop, and the gifts stop, and your coworkers checking in. This is a new normal, a new reality for you. And so you're...it's a continuum, so to speak. You're continuing the work on your mental health, on your physical health, literally trying to regain your strength. You may be working on your spiritual, or you may be working on your, you know, your relationships and repairing your relationships, you know, physical...You know, I look in the mirror, I have stars in my body that I didn't have before cancer. You know, I've got biopsy scars and ports and catheters, you know, just stuff, right? That you know, I have to learn to love a new version of my body. I have to cope with the potential reality of infertility. Right, due to the harshness of the treatment. And for those of you who may be patients or caregivers or survivors, my thing is you just to say to you, give yourself grace, because this is an ongoing journey, right? It doesn't end, and not to scare anyone. It doesn't end when the treatment ends. You go into remission. There's a new normal and a new reality for your life. And it's a part of your story.
“I have to learn to love a new version of my body. I have to cope with the potential reality of infertility. ”
Lyndsay Springer: Yes. Well said. Thank you so much for your perspective, for your story, for your message of hope and positivity. We're going to speak it into existence now. You are in complete remission, and the Hodgkin's lymphoma treatment is behind you. But now you're part of this advocacy, this work of spreading your message of hope and spreading awareness to other people. Chike Springer Foundation. And we're happy to connect you with other organizations as well. Thank you so much.
Tori McGee: Absolutely. I think it's important that we continue to have these dialogs push the conversation forward, especially within the Black community. We don't like to talk about our business, okay, like I'm trying to be a generational curse breaker. You know, it depends on, you know, our parents and our parents’ past. It’s like, you know, we don't talk about our business. We have family members that have passed, and we don't know what happened, you know, like that. Of course, they know. But we're like, what happened to so and so? What happened so and so? Or there’s family friends who passed away, but they were suffering, and they were suffering in silence, and they were suffering alone. And they didn't necessarily want to burden other people, quote unquote. Right. With what their situation or circumstance. And I think it’s important, the work that you're doing, because it allows us to have a platform to connect with others and to be a safe space for people who are going through this journey. And if we can make someone feel less alone, count me in.
Lyndsay Springer: Absolutely. Thank you so much, Tori. It's been a pleasure
Tori McGee: Thank you so much for having me.
“And I think it’s important, the work that you’re doing, because it allows us to have a platform to connect with others and to be a safe space for people who are going through this journey. And if we can make someone feel less alone, count me in.”