Paige Comer and the Power of Patient Advocacy in the Face of Cancer
“If I wasn’t so persistent, I would have never found out that I had stage four cancer. I would have just let it go on and on. And I demanded, seeing doctors, doing a biopsy, doing a CT scan and everything. And I’m really happy that, obviously I don’t love the diagnosis, but I’m happy that I was able to be an advocate for myself and I hope people are advocates for themselves as well. And if you know something isn’t right and feel it in your body, you should go to the doctor. You should go to the hospital.”
Cancer is a disease that can touch any family. It doesn't care about race, culture, or social status. No one is immune to its grasp, and cancer doesn't discriminate. That is why it's so important for everyone to be aware of the different types of cancer, how they manifest, and the treatments available. Paige Comer is a lymphoma patient who is doing her part to spread awareness for lymphoma and the Adolescent and Young Adult (AYA) community. In this interview, she talks about her experience with cancer, how she stays positive despite her diagnosis, and the importance of advocating for yourself.
Paige credits her persistence and determination for leading to the discovery of her stage four cancer, emphasizing that self-advocacy is essential when it comes to medical conditions. She encourages others who feel something isn't quite right to take action by seeking medical help.
Through her experience, Paige is emphasizing the importance of early detection and a proactive approach to health. She wants AYAs to be more aware of their bodies and to go see their doctor if they feel something isn't right. Paige's story serves as an important reminder that we all need to be our own advocates when it comes to our health, and to not hesitate in seeking out medical advice if something doesn't feel right. By spreading awareness, Paige hopes her experience can help others find the courage and strength to fight for their health and stay positive in the face of cancer.
“I would like people to know that you have to stay positive. As awful as it is, no one wants to be cooped up in a hospital. You have to stay positive. You have to stay optimistic.You really have to like as hard as be happy, put a smile on your face, be extremely nice to your nurses and be lucky that you’re able to get a treatment because there’s a lot of people who just live with cancer forever. And if you have non-Hodgkin’s lymphoma, your chances of it going away forever are very high. So be happy you are able to get treatment even though it is at a hospital.”
Interview Transcript
[LYNDSAY]: Hi, I'm Lyndsay Springer from the Chike Springer Foundation. Today we have Paige Comer who's here to share her story being newly diagnosed with non-Hodgkin's lymphoma. She reached out to our organization on Instagram because she really wants to bring awareness to non-Hodgkin's lymphoma in the AYA population. Welcome, Paige.
[PAIGE]: Hello, How are you today?
[LYNDSAY]: Good, good. So, for the first question, I just want you to share a little bit more about your story and what inspired you to reach out to the Chike Springer Foundation.
[PAIGE]: Hi, my name is Paige Comber and I'm 28 years old and I guess now I'm part of the really cool organization. I think it's called The Young Cancer AYA the really cool new foundation, the organization. And I just wanted to share my story because it's not really that popular that a young kid would get stage four non-Hodgkin's lymphoma cancer. And to be honest, I was, like, completely shocked that I got it. I never thought that this would be going through to me. I...the only symptom I had was super nauseous and I took it upon myself being really nauseous to really try and get to the bottom, like why have I been nauseous for a month? None of this adds up. None of this makes sense. And another reason is I reached out, if I wasn't so persistent, I would have never found out that I had stage four cancer. I would have just let it go on and on. And I demanded, seeing doctors, doing a biopsy, doing a CT scan and everything. And I'm really happy that, obviously I don't love the diagnosis, but I'm happy that I was able to be an advocate for myself and I hope people are advocates for themselves as well. And if you know something isn't right and feel it in your body, you should go to the doctor. You should go to the hospital.
[LYNDSAY] Oh. Absolutely. You know, self advocacy and self awareness is something we promote, just bringing awareness to the disease and the complexity. It doesn't always present the same in young people. And a lot of times, unfortunately, young people can tolerate more disease because they're healthy and feeling pretty good. So it is a later stage when they are diagnosed with non-Hodgkin's lymphoma. So, I mean, just that's so great that you're able to listen to yourself and advocate for yourself and get to the doctors and and you know, start this treatment journey.
[PAIGE]: Yeah, that was really surprising because who would think being nauseous you would have stage four cancer. So and but looking back on it, I had every sign, like I had bruises all the time. I would always have swollen lymph nodes. I never did find a lump, which was a huge sign of it and of having lymphoma. And then another like the night sweats. So I did have every symptom of it, but never related any of that to cancer because it's not talked about. No one knows what non-Hodgkin's lymphoma signs are, what their side effects are like. Why would I think because I had bruises after going out one night that I would have cancer? Doesn't make any sense.
[LYNDSAY]: Yeah, absolutely. I mean, Chike presented extremely abnormal as well. Same thing. Never found any lumps. He seemed he had seemed like he had a sickness and then got better and then got sick again. And it was just it was weird, but similar situation where we're just like, something's not right. Like, this doesn't seem like a normal sickness.
So you just started your or you just finished your first round of chemo. Can you tell us a little bit about the treatment journey and maybe something that people aren't aware of going through treatment?
[PAIGE]: Yeah, well, one fun fact is if you have stage four, you have to be in a hospital. I had no clue that I thought I got diagnosed and I thought, okay, I'm going to go sit in a chair for 4 hours, get my chemo once a week, every other week. My treatment is four or five...it’s five days in a hospital, 96 hours of chemo. And I check in and I am there for five days straight. I am hooked up the whole entire time and getting chemo for 96 hours. And it's the craziest thing in the world because I've never been to a hospital in my life until I got diagnosed with cancer and saying, This is your treatment and you think only older people go to the hospital, you don't think like a young person and everyone on my floor is older. So it's kind of funny. But yeah, that's so my treatment is 96 hours of chemo every one week on and two weeks off. And at the moment I'm doing a little bit of pausing because I don't know if most people do know this, that if you go through chemo, you have 50% chance. All your eggs are gone forever. So I'm in the process of freezing my eggs as well if I want to have a kid in the future.
[LYNDSAY]: Yeah, a lot of things to consider for the young adult population is not just, you know, the treatment now, but what will happen in the future. Impacts to life goals, having children, you know, other illnesses or issues with bone health and things in the future that have to be considered. What do you think going forward, you would like people to know about the treatment journey and about what it's like and getting treated in a hospital?
[PAIGE]: I would like people to know that you have to stay positive. As awful as it is, no one wants to be cooped up in a hospital. You have to stay positive. You have to stay optimistic.You really have to like as hard as be happy, put a smile on your face, be extremely nice to your nurses and be lucky that you're able to get a treatment because there's a lot of people who just live with cancer forever. And if you have non-Hodgkin's lymphoma, your chances of it going away forever are very high. So be happy you are able to get treatment even though it is at a hospital.
[LYNDSAY]: Absolutely. And I love that message of positivity because Chike was all about that. He used to always say, you know, we just have to make things better than how we found them. So whether it was in the hospital or he actually was able to do outpatient treatment after his first round, but just, you know, bringing treats to the infusion room and things like that and making, you know, your nurses have have a huge job and a lot of heartbreak, you know, goes into treating cancer patients. And these nurses have done it for years. So just like you said, I love that you said be sensitive to them. They're people, too, and they're going through it as well.
We talked a little bit before on the phone, and I told you that the AYA, the young adolescent group is an underrepresented group in non-Hodgkin's lymphoma. So why do you think it's important not just for treatment, but also thinking through those long term health impacts to get the AYA perspective for the cancer treatment?
[PAIGE]: I think a lot of people don't know anything about this cancer or even the association. I didn't even know there was a young cancer association before I even found out I had cancer whatsoever. I don't think it's really brought to light. People aren't really talking about it and yeah, it is really scary, but I think people should be talking about it more. They should be bringing awareness and if you don't feel something is right, you should say something. You should go to the doctors. I just think that most people aren't talking about it and I think it needs to be more aware.
LYNDSAY]: Yes. And we definitely share that mission of awareness. And, you know, we just
thank you so much for sharing your story. You know, we'll get updates with you since this is kind of brand new. And we're unpacking a lot of this. You know, we would love to get updates with your story and how you're doing and just things that you're learning and people that you're interacting with because it just exactly what you said brings awareness and builds the community so that we have a better understanding of not just the research which we are all for. We're very big into research, but also just what it's like being a patient and even a caregiver. So thank you so much again for sharing.
[PAIGE]: Yeah, of course. And I definitely think take care of your mental health as well as physical health and be as positive and optimistic as you can. You you cannot get through this if you're not positive. That's the number one thing I would like anyone to take.
[LYNDSAY]: Yea, I completely agree
“Take care of your mental health as well as physical health and be as positive and optimistic as you can.”