Keeping Your Hair Through Chemo: What Is Cold Capping and Why Does It Matter?

In this powerful episode of Voices of Inclusive Research, Dr. Renarda Jones sits down with survivor and advocate Chenyka “Nyka” Ramos to talk about her journey with Hodgkin’s Lymphoma, cold capping, and what it means to navigate treatment as a woman of color.

Together, she and Dr. Ren unpack the larger issue of representation in research and treatment protocols—from the absence of women of color in cold capping studies, to the small yet meaningful resources and advocacy networks that can make this option more accessible.

Penguin Cold Caps – Learn how cold capping can help reduce hair loss during treatment: penguincoldcaps.com.

HairToStay – This nonprofit makes scalp cooling more accessible by providing subsidies for patients in need: hairtostay.org.

Watch the video that inspired Nyka to try cold capping herself: https://youtu.be/eSv9JKGl4oQ

🎧 Tune in for an honest, deeply personal, and practical conversation that blends survival, science, and the urgent need for equity in cancer care.

Must-Hear Insights and Key Moments

• Hair Is More Than Cosmetic – For many women, especially women of color, preserving hair during treatment is about dignity, identity, and strength.
• Representation Gaps in Research – Most cold capping studies and recommendations don’t account for textured hair, leaving women of color without guidance.
• Barriers Beyond Cost – Awareness, cultural stigma, and provider education shape who even gets offered the chance to try cold capping.
• Community and Advocacy Matter – Nonprofits, resource lists, and persistence can help patients access funding and support.
• Success Is Personal – Keeping 50% of her hair was a victory that made the journey feel more survivable.

Words of Wisdom: Standout Quotes from This Episode

• “Don’t be afraid to ask questions. Don’t be afraid to say, Hey, can I get support with this? Or, Hey, are there any subsidies or is there any money out there for this? Because there is.” – Chenyka Ramos
• “Just because one door closes… doesn’t mean you stop trying. ’Cause I got plenty of no’s.” – Chenyka Ramos
• “Anything that’s gonna help me feel more like myself, I’m gonna take it.” – Chenyka Ramos
• “You gave yourself a chance and it worked.” – Dr. Renarda Jones
• “That’s what research is like, finding the answers that are gonna work for us.” – Dr. Renarda Jones

About Chenyka

Nyka is a San Diego native who completed both her bachelor’s and master’s degree at Alliant International University. 

She is a recent survivor of Hodgkin's Lymphoma and has made a commitment to providing advocacy and education on the disease. She is excited to share her experience with cold capping and will continue to advocate for the use of hair preservation treatments.

Follow Chenyka Ramos:

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Follow Dr. Ren:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Transcript

Note: We use AI transcription so there may be some inaccuracies

Dr. Ren: Welcome to another episode of Voices of Inclusive Research VIR. I'm your host, Dr. Founder of Diverse Research Now and today you will hear the voice of Sheika Ramos, AKA Nika.

Nika is a marriage and family therapist and a recent survivor of Hodgkin's lymphoma. She has made a commitment to providing advocacy and education on the disease. She is excited to share her experience with code capping and is an advocate for the use of hair preservation treatments. I have been looking forward to this conversation, so let's get started.

How are you doing today, Nika? I'm 

Chenyka Ramos: good. I'm good. How are you? 

Dr. Ren: I'm doing good. I'm doing good. Just fresh off a plane. Yep. Chicago, it's from our Brain Health Summit in Chicago. But so excited to to have this conversation with you about your experience, with Hodgkin's lymphoma and your experience with preserving your hair while you were going through the experience.

 and we're gonna talk a little bit about research in there. You know, we always wanna bring in research and connect the dots, but, so excited to hear your story. So tell us who you are, the work you do and your story. 

Chenyka Ramos: Yeah, absolutely. So as you mentioned, I am a licensed marriage and family therapist.

I've been in mental health for 15 plus years. pretty colorful background. lot of different clientele throughout the years of course had a lot of different clients who have had cancer themselves or survivors themselves who have had family or friends or survivors, or have unfortunately lost their lives to cancer.

So no stranger to hearing about the challenges that people experience, but couldn't have anticipated that in, 2024, the end of 2024, I would get this diagnosis of Hodgkin's lymphoma. so that was rather tell that was very, you know, it was a lot to take in. after seven months of going through a lot of different doctors, a lot of different question marks about the symptoms that I was experiencing and finally getting this diagnosis.

 I didn't know much about Hodgkin's. I had been doing some research along the way just in case, because they told me it was a possibility. you know, so when I got the final diagnosis, I knew sort of what I was up against and I knew hair loss was one of, one of the main things. Okay.

Dr. Ren: now, what happened at the beginning?

What, signs did you have? What happened to you and to Yes. Your diagnosis. Like what? Yeah. 

Chenyka Ramos: Yeah, that's a great question. So many people have asked me. Mm-hmm. So, just from what I have heard from other survivors and then from what I've heard from my oncologist, a lot of people stumble across Hodgkin's by accident.

The typical, uh, signs are, masses in your chest that are found from CT scans. Mm-hmm. I experienced, I didn't have the typical symptoms like itchy skin. I didn't lose weight all of a sudden. I had pain in my neck. So I had excruciating pain from my neck to my left arm, for about a week or so, and I had just come off of a trip abroad maybe some weeks before that.

So I had thought maybe I pulled a muscle or something. Wow. Okay. and initially I went to urgent care and was told that that's what happened. They gave me some pain meds. Really. Um, my arm was really swollen and they told me that, you probably pulled something, we're gonna give you something for the swelling and pain and then if it doesn't go away, come back in a couple days.

But I knew better. I went to the emergency room that night. From there, it spiraled a lot of different tests. They did a CT scan, they found I had a mass in my chest. I had multiple masses in my neck. Wow. Um, but still was not diagnosed with Hodgkin's. Right. They had, yeah. After seven days in the hospital, they told me that, I had an infection.

They thought I had a bacterial infection and that they wanted me to stay on antibiotics. the infection was my white blood cell count was going back to normal and they couldn't figure it out. at the time, 38 years old, you're healthy. Otherwise we don't know what's going on with you, but we've ruled out cancer because it's not showing up in your blood work.

Dr. Ren: and so what you were thinking probably was just that you like picked up something from abroad, right? What happened abroad? Like I'm sure that's probably what you were thinking. 

Chenyka Ramos: But, you know, honestly I was questioning that because I said, you know, I was to Madrid, Spain, I was in the city, I was in a group, amongst friends and family and I'm like, no one else is sick.

This is weird for this to be a bacterial infection. So I questioned that diagnosis For a long time. Okay. And then after seven days, I said, You know, I need to get a second opinion because after seven days, this is crazy. I'm not super sick. So the thing about bacterial infections is typically people have high fevers.

 and I never had that, so I went home and I went on this journey. I saw a doctor after doctor, after doctor, trying to figure out what was going on. And then after that initial, antibiotics, the two weeks that I was on it, I got another CT scan and that mass was still there. So, I finally, after a lot of advocating, a lot of pushing back with doctors, I finally got a second opinion through UCSD.

I saw a thoracic surgeon and an ENT, surgeon, and, they said, we need to do surgery to go in and remove this mass. Bit by bit. we're gonna use a, I forgot what the procedure's called, but they actually use the robots to go into my side to take the mask because where it was located was very difficult to get to.

So four and a half hours later, I had a bit of my, lymph node removed from my neck. And then I had this mass taken outta my chest and I had to wait about three weeks for the testing. And that came back Hodgkin's lymphoma. So at the end of 2024, December, early December, I got diagnosed with Hodgkin's lymphoma.

Dr. Ren: Wow. Three weeks. That was a long wait. how long was that? Three weeks. I'm sure it was a long three weeks. 

Chenyka Ramos: YouI am a woman, aside from the mental health, been doing this for a long time. I practice what I preach. I really didn't allow myself to get anxious or worried about something that was out of my control.

Okay. that is something about me. Through this whole journey, you'll kind of hear me talk about that, I'm sure. Today. I just didn't allow myself to get overwhelmed or consumed with something I said. Whatever it is, I'm gonna face it. Yeah. I'm gonna deal with it and I'm going to be okay. And I a hundred percent believe that from the day I went to the er, to the day I had the surgery, to the day I finished chemotherapy, I a hundred percent believed that I was going to be okay.

Yes. So, there's a lot that mental peace, that mental component of not, you know, freaking out, not overly thinking about things. I knew about Hodgkin's lymphoma. I did a little bit of research and what I found was all positive. Okay. Fortunately, Hodgkin's Lymphoma is one of the most well-researched cancers out there.

Okay. and when you are younger and diagnosed with it, you have a better chance. So there's about a 90%, it might be a little bit higher, chance that I will never get this again in life. people respond very quickly to medications. And again, like I said, I have a 90%, maybe a little bit higher chance that this is just a fluke, something happened in my body and that I won't have to worry about this again.

So, with knowing all of that, my focus turned to, okay, how am I gonna save my hair? 

Dr. Ren: That was one of your first questions, when you found this out. Yes. That was one of your first questions. 

Chenyka Ramos: Absolutely. Absolutely. What? 38-year-old woman wants to lose all of her hair, and so I, heard about cold capping.

Fortunately, like I said. The experience of being a therapist. I had the year prior to that, I had a client who mentioned cold capping because they were helping a family member pay for the cold capping. And I immediately never heard of it. what is that? And so I went online and researched it and I remember thinking to myself, how have I never heard about this?

It's been around for a really long time. How have I never heard about cold capping and preservation? You know, hair. 

Dr. Ren: Yeah. No, but I think that it's amazing that that caught your attention. 

Chenyka Ramos: Yes. 

Dr. Ren: And then a year later you would be needing to use it because you didn't have to go and like research that you could have just heard her talk about it and just passed, you know, keep going.

No, but you went and researched that and look at there. You needed it. 

Chenyka Ramos: Absolutely. And I think my primary at that time, I'm not a researcher by any means, but I come across all these stories and, you know, I do have, my practice right now is primarily women of color, and I think the more I know, the more information I have as a provider, as a clinician in the community, the more I can help.

And so that was my intention. Just, formalize, get to know at least, uh, familiarize yourself with what's going on. And so, had no idea that I would be using it. So I already had an idea about cold capping when I met with my oncologist the first time. 

Dr. Ren: Okay. your oncologist was like, Hey, let's do it.

So 

Chenyka Ramos: initially, I went in there with a lot of questions. Okay. I think uh, my first time meeting the oncologist, I met with her. Three hours. It was a good three hours, solid three hours. We sat there and talked. Yeah. you know, she was talking about my case and, you know, she was like, I can't believe you went through all this.

And, know, we talked about a lot of things and I absolutely love my doctor's name is Heather Tracy. She's Sharp Memorial, oncologist for 20 plus years. She's a wonderful oncologist, very caring, very thoughtful. Shout out to her because she's gonna listen to this, I'm sure. and so we met for a really long time and that, the piece of that was I had said to her, I said, I know about the cold capping.

Tell me about your experience as an oncologist. What have you seen with the success? Mm-hmm. And then have any of these women been women of color? So what do you know about that? Because I do have different textured hair. And from what I had saw on videos, it was a lot of, it was primarily Caucasian women that were doing this cold capping.

 I hadn't seen any woman of color at that point. I hadn't seen any videos. So she said, that's a good question. I don't have a ton of research on it. Let me see what I can find. And then I said, let me see what I can find, but I'm absolutely interested in doing this. And then she also mentioned to me, which is this is a big piece.

Dr. Ren: Mm-hmm. 

Chenyka Ramos: Is, you know, insurance does not pay for this. Okay. Insurance does not pay for this. That's definitely a big piece through the book. Oh, it is. Absolutely. you're already in a crisis, you know, if you're navigating the medical anything. with chronic illness and disease, you know, it can be very expensive.

 and it can be very challenging, especially with something like cancer where you may not be able to work. all those things are running through my mind because I'm well aware of these factors. but anyway, so, fast forward, I did my own research. I stumbled across a YouTube video.

 I need to get you this YouTube video. Um,Four physicians, four black women physicians who were talking about cancer, and they were talking about two out of the four had did cold capping themselves. Okay? And I remember watching that video and that that was it for me. It clicked. There were certain things that were said in the video.

 They, they provided a lot of good information about their own experience, how much hair they lost, just what to expect with cold capping. So I knew going into it, this is going to be a commitment, okay? I'm not gonna just be slapping a cap on my head for two hours and done, no, this is gonna be hours.

It's gonna be a commitment I have to go through the process. But hearing their success. It motivated me and it gave me the extra thing that I needed to pursue doing the cold capping. And I'm forever grateful, for watching that video because like I said, there weren't a lot out there, at least when I was researching it.

Dr. Ren: So, yes, if you can get us that video, we would love to put it in our, post. Yes. Because more and more, if you needed that video, there's uh, so many other people out there that need that video. Absolutely. 

Chenyka Ramos: I believe I saved it on my channel. but I will send that over to you because that, I watched that video entirely.

 And I cried. I didn't know what to expect. It was very, very. Emotional, Because I'm in that early process just being diagnosed. But like I said, it was that motivation and inspiration that I needed. And then I went back to my oncologist, for orientation, and that's when they provided information on the cold capping.

So the cold capping, it's not a lot of information. I mean, there's only, a couple of companies they're not even contracted, I would say. They're just, for whatever reason, penguin cold Cap has been around for quite some time. that was on the top of the list of companies.

Mm-hmm. trusted, I guess trusted companies. So I called the representative that same day. We left orientation and I called and, you know, started, set up an appointment to have a phone call later on with a representative so I could ask them all the questions. Okay. And start the process as soon as possible.

Dr. Ren: Yeah. how open were they with answering your questions? 

Chenyka Ramos: Very open. Very open. the representative that I had shared a little bit about his story and how he got into cold capping and what he's seen, actually what was helpful is that he shared with me that his wife is a woman of color, black woman, and she had used cold capping and she was able to save her hair.

So that was very helpful. you know, I mentioned to him, listen, I have, curly hair, I have thick hair, you know, this is what, I'm thinking about doing. And I was diagnosed with Hodgkin's lymphoma and he said to me, you know, I'm not familiar with the protocol medication for Hodgkins. Send me over the medication that you're gonna be taking, and I'm gonna consult to see what your success rate is going to be.

Dr. Ren: Wow. That's awesome. So they did, they did some further research Yes. For you? Yes. That was awesome. Okay. And this was Penguin. This is Penguin. Cold caps. Cold caps. Okay. Um, 

Chenyka Ramos: and so they, got back to me and he said, listen, because of this specific medication you're taking, it does drop your success rate down.

So you are, if you do it right and you're consistent, you're looking at saving between 50 to 70% of your hair. And to me that was better than zero. 

Dr. Ren: Yeah. High percentage. That's a pretty high percentage. 

Chenyka Ramos: Absolutely. Better than zero. Yeah. Than, and so we got on to the next step.

So, things that are important, if you are listening to this or watching this and you're thinking about it, where I was last year, you just got diagnosed. you don't wanna lose your hair. You worried about that? think about. Who potentially could help with the capping. You can't do it by yourself, okay?

Um, that's one of the challenges is that you cannot just do this capping by yourself, and you don't wanna do it by yourself to be honest. 

Dr. Ren: So you need that support system. A strong support system, someone's gonna be as committed as you are for about saving your hair. 

Chenyka Ramos: Absolutely. Yeah, because, chemo is hard on the body.

It's tiring, you wanna focus on that part of it. And then, you having somebody else do the caps for you, they're gonna be keeping track of the time because you do have to switch them out. So, I'll talk about that in a second. I'm grateful that I have a wonderful partner who's able to do that and, know, said, I'll take care of that for you.

So he started doing his own research and, started looking at videos so that he could, learn the process. But the first time you do the capping, so you sign up, but before you jump in ahead, you sign up, the representative sends you an email with a ton of information. What I really, really liked about Penguin Cold Cap is they send you a ton of information, instructions, they send you helpful tips.

 I changed a lot of things. So I wind up, not drinking coffee. they said you can decrease your caffeine because caffeine actually disrupts the blood flow to your hair follicles, which I did not know. I didn't even wanna mess with, you know, decrease. And I said, I'm just not gonna drink coffee.

Yeah. Okay. So I stayed away from caffeine for about five months. Okay. and then they talk about deodorant, you know, changing your deodorant, not using aluminum based deodorant. So I changed my deodorant. That was a challenge going through, I dunno if you've ever tried to use natural deodorants, but boy, 

Dr. Ren: you know, but I know some people who have, and it actually worked for them.

But I mean, it don't work for everyone. 

Chenyka Ramos: No. I had to go through a couple to find the one that works for me, but, so that was a different, and the other thing was like, just adjusting to one, I am, someone that loves the the diversity of. Being able to wear my hair in a lot of different ways, protective styles.

If I wanna wear my hair natural, if I want to have extensions, if I wanna closure, if I want braids, I've done it all. know, and to say, wow, you can't do any of that in this process. You have to have your hair natural this whole entire time. Not even wear well, I'm not, particularly with wigs, but definitely nothing over your head, no wigs, no caps, things like that.

Dr. Ren: Yeah. Nothing, nothing stressing your head out, 

Chenyka Ramos: right? 

Dr. Ren: Nothing. 

Chenyka Ramos: Right. Nothing that's gonna be pulling the right, even wanting to stay out of the sun. We live in San, I live in San Diego. It's sunny here. so thinking about all those things, I was like, okay, what am I going to do? I haven't had my hair.

Okay, I gotta find curly products for my hair. That's not gonna be, toxic. I have to look into all these things. So I just went with the most basic products that I could find. Coconut oil, no toxins, no parabens, none of that, and I just really, we went back to the basics of the basics for my hair.

Dr. Ren: And so you have to do what you have to do. Yeah. You know, you were committed. Absolutely. I wanted to ask, is Penguin a, US company or is it a European company? 

Chenyka Ramos: I believe that they are, UK based. they do have representatives and they have, obviously cappers all throughout the states, but I do believe they're UK based, based on the emails and things that I got from them.

Yeah. My understanding is that cold capping originally started for children. Oh. Is my understanding. My understanding is that, penguin started cold capping about 29 or 30 years ago. 

Dr. Ren: And it originally started for children and then it just grew. However, it's not really talked about and heard of.

Chenyka Ramos: No, at least in the states and you don't really see a lot of it. I think people just anticipate they're going to lose their hair. 

Dr. Ren: Yeah. And the doctors are not talking about it either. No. 'cause I feel like that's where you would want to hear about it first. Right? that should be an option.

And once you get this diagnosis, like that should be in the packet or something. Whatever they're giving you. 

Chenyka Ramos: Yeah. for me, even what my experience was is my doctor, she came to the infusion room to talk to me about something else and she saw me capping. And so she got to see it like, as it was happening, you know, live.

And some of the nurses in the infusion rooms were saying, you they asked questions. But I was open to that. I was definitely, when it comes to this topic in particular, just cancer overall, I've been very, Transparent about my experience, because I think not enough people, rightfully so, you don't have to, but a lot of people don't wanna talk about it.

 this is probably one of the hardest things they've been through in their lives, and it's difficult to talk about. So I get that. But I said, no, I'm going to talk about my experience, because there's so much miseducation out there, there's a lot of ignorance. There is a lot of just misinformation in general.

Mm-hmm. And so if I've been able to help through talking about my experience, and that's great. 

Dr. Ren: Yeah. No, thank you so much. As someone who's gonna listen to this and they're gonna commit to cold capping, and this video is gonna It to that video that you found? Yes. the next video they watch.

I hope so. I hope so. About amping because the reason why I really wanted you to talk about it and really to get this out, on our platform is because I had never heard of it before as a researcher. Not that I research in this area. My background is like brain health and Alzheimer's and dementia.

But, I had never heard this, as a black woman, black women, we all know we do have high rates of cancer, especially breast cancer and even other types of cancer. And so Yes. many of them lose their hair. Right. and so I wanted to bring this to the platform because if it can help someone, a woman of color.

To keep their hair, to give them that, confidence and empower them as they're going through a diagnosis like this. I want to do that. Absolutely. So, definitely thank you for your transparency in this. 

Chenyka Ramos: And I jokingly said, but very serious, jokingly said to my doctor, I said, as long as I have enough hair to braid, at the end of the day, I know that I can, get extensions put in, I can get a closure.

I can do that. as long as I have hair on my head to braid and my hair will grow back, I am confident of that. you know, I've always kept my hair healthy, I was just very adamant about that. And so, you know, kind of jumped to the process. Mm-hmm. so the way Penguin cold cap works is that you are renting the cold caps from them on a monthly basis.

Okay. So please, please, please, please. Like, just listen. I, I didn't know about any of this stuff. I'm finding it out as I'm going. Mm-hmm. But there are so many resources out there to help you, even if you can't get your insurance to pay for it, which I will say try anyway. Yeah, try anyway. Don't listen. Try anyway.

You never know. Insurance companies are paying for this more and more. They're starting to pass different, you know, legislations, laws and all these things. even within my insurance company, they don't pay for it. But there was a loophole, so I got some of it paid for. but I would've never known if I didn't try.

Dr. Ren: Good to know. Good to know. 

Chenyka Ramos: You have to try. You have to try. Okay. Does that take more time and more energy from you? Yes, it does, but it's worth it you know, in the long run. you sign up, you pay for the monthly. and then you can ask them, do you know any nonprofits?

 Uh, there's a nonprofit out there. I think you're gonna list this with this video called Hair to Stay they provide you with a subsidy if you qualify. The application process is fairly simple. so you go on there and you can apply for that. you can also ask the, whatever company you go through, the penguins, penguin Cold Capping, or any other company that maybe your oncologist has.

In the orientation packet, ask them if they provide any assistance or subsidies. also ask your oncology department about the financial support. Okay. They have resources there. They have, social workers and usually have someone there to support you in this process.

So you can find out resources that are available. 

Dr. Ren: And the hospital's different. So like every, oncology unit is different. They have, might have different resources. So, 

Chenyka Ramos: and depending on what kind of cancer you have. Okay. So with me, I didn't find the Lymphoma and Leukemia website wasn't that helpful.

There a lot, they have a lot of different things going on there, A lot of, resources, but it wasn't available. but breast cancer, I mean, there's a lot of different resources. So even depending on the specific type of cancer you have, you may be able to find something out there for you if you're a woman of color, if you are a particular age, you know.

 so yes, asking for help. Don't be afraid to ask for help. Don't be afraid to say, you know, I need support, with this thing. with the finances, with travel, even if you decide not to do cold capping, still ask for resources for support, whether it's with your copays, your, deductible travel, whatever it may be.

'cause there are lots of things out there. 

Dr. Ren: And then I remember us talking about what not to do. Yes. Because there was some research that you found where people was using it, getting these caps from Amazon and it wasn't very successful. So tell me what you found about that. 

Chenyka Ramos: I'm pretty social.

I'm a social person, obviously I'm a therapist. I talk to people. I'm comfortable talking to people. So I got to know, and talked to many of the nurses, in the oncology centers, shout out to the nurses, the amazing nurses there. And, you know, we started talking about their experience and they said there were a few who had mentioned, and even I had talked to a patient, a woman who had also been diagnosed with lymphoma.

I'm not sure what type, but she had mentioned, oh, I did the caps too, but I didn't do, I ordered mine from Amazon and she said, yeah, I wind up. Balding, you know, it wasn't quite effective for me. And so, I just think that there are, I've looked into it. I went on Amazon, I've looked at those caps on Amazon.

 they are by far way cheaper, much more affordable. Okay. But I think the problem with that is, some of the designs of that cap, the cold capping from Penguin is a specific design. Okay. The way it goes on your head is a specific way because you want the idea, the science behind this is that you want to freeze your hair follicles so that the medication does not penetrate the hair follicles.

Right. 

Dr. Ren: Exactly. Thank you. Thank you for sharing that. 'cause that's exactly the science behind it. 

Is that you're trying to keep your hair follicles so cold. that, that medication doesn't affect it. Okay. Yes. 

Chenyka Ramos: It doesn't get to your hair follicles. So that means though you are. Wearing the cap.

So you are sent, I was sent three caps and every, like clockwork I went to. so the first time that we did the co capping, a representative from Penguin Co Cap came out, a capper, professional capper, wonderful person. She was wonderful, very supportive, and she showed us how to do it. she stayed with us the entire time, so with a particular medication that I was taking.

It was, recommended to me, by the cold cap, company that I wear this cap. I wear the cap five hours after the, in that medication was given to me. that my head would be cold and it would maintain that, certain temperature. So in total, every time I went to get my infusions, I was wearing this cap for about six and a half hours.

In total, we would start a little bit before that medication so my head would be cold, and then we would make sure that we did it five, five and a half hours after the medication. Okay. Um, so six hours, six and a half hours is a long time to be wearing a cold cap and you're switching it every 25 minutes.

Dr. Ren: Right, because it has to stay at certain temperature right 

Chenyka Ramos: around 30, 35 degrees. 

Dr. Ren: Okay. Okay. 

Chenyka Ramos: Yes. So that means, so when you get the cold caps in the mail, this is what you can expect, at least, like I said, from Penguin Cold Cap. the caps came very fast. I got them within two days. so once I paid for the initial month and the deposit, I got them in the mail.

They sent a cooler in the mail with these three caps and all of the, you know, everything that you need. and then I basically made sure that I had access to dry ice. Luckily, where I live, there's a place not that far from the my house where they sell dry ice. Okay. And I went there, okay? I went there and I talked to the owner and he said, well, you know, what do you need, dry ice for right?

Were coming in there for using dry ice for, their companies. I said, you know, I've, diagnosed with cancer. I'm gonna be doing cold capping. And he said, oh, okay. and so he, gave me a good deal, right? A good deal. I said, I'm gonna be coming every two weeks. You're gonna see me for a while. Okay. You know, this is how much I'll charge you for this amount of ice.

Okay? So they tell you in the instructions how much IC need. so you know that ahead of time. and then after that first initial time with the capper, we knew what to do. We started, you know, researching more online, looking at some videos, and, we started it, we did it on our own. So, like I said, my partner did his research and we did the capping on our own because it is expensive to have someone come out every time.

And do the capping for you. If you have to hire someone through the company, that can be very expensive. 

Dr. Ren: and that is an option though. 

Chenyka Ramos: It is an option. 

Dr. Ren: Absolute. 

Chenyka Ramos: Give you an option. Okay. I have a question. They stay with you the whole entire time. my cap came home with me. She asked me, do you wanna stay here?

Do you wanna go home? And I wanted to go home and be in the comfort of my own house. And she was wonderful. it was great, but I knew financially that that was not gonna be practical for me to do every two weeks. 

Dr. Ren: Yeah. And so I wanted to ask the caps, how soon are you putting them on dry ice before you put 'em on your head?

So. 

Chenyka Ramos: Yes, that's a good question. my appointments were at like nine 30 in the morning. So we would go get the dry ice around 8, 8 15 and then we would put it right as soon as we got the dry ice, we would put the caps on. So that way by the time, infusion started, medication started, they were cold.

Okay. Okay. Okay. They were cold. and they also send you a thermometer so you can monitor. 'cause you have to monitor the coldness on the cap. Yeah. So they send, they send a whole kit, everything you'll need, gloves, a comb. I mean, they penguin cold cap, they sent everything, 

Dr. Ren: everything. So while the cap is on your head Yeah.

There must be a thermometer, 

Chenyka Ramos: no, no. So initially you just wanna make sure it's at the right temperature, and then you, just put it on your head and then the capper is. Making sure that, the other caps in the cooler are staying cold, layering the ice appropriately to, it's a trial and error process.

You'll figure that out. Yeah. but no, you don't have to. 'cause it'll stay cold. Okay. But you're not keeping it on your head more than 30 minutes. So then 25 minutes goes by and you're taking that one off and you're switching it off. Okay. 

Dr. Ren: So that's 

Chenyka Ramos: like 

Dr. Ren: clockwork. That's just what the process is.

You're taking it off every 25, 30 minutes. Yes. Yes. so it's a full day commitment, so Absolutely. Like you used to prepare yourself 

Chenyka Ramos: Absolutely. And I think that's where I've heard. Women, women that are not consistent in that, because like I said, it is a lot. I am not gonna tell you this is gonna be easy.

I did not going into it, the first couple times was pretty easy for me. Yeah, it was a long day, but it wasn't really terrible. But as chemo progresses, it gets more difficult because now chemo's building up in your body. and so you may have more side effects. For me, I had really bad nausea.

I was so nauseous no matter what they gave me, didn't help. And having that cap on my head did not help with the nausea. It intensified the nausea for me. Mm-hmm. So as we went on, you know, I did six rounds of chemo, which is 12. So I went 12 different times, over the course of five months. And I would say that last month for me was harder.

It was definitely harder. but the reward of that was having hair on my head. Yeah, I I started treatment at the end of January. I would say about, around May is when I started noticing thinning in the front, right around like that, the hairline.

That's where I started experiencing some thinning. Okay. but I still had a lot of hair, and then that motivated me to keep going because it was working. Yeah. 

Dr. Ren: Yeah. Because you didn't know if it was gonna work or not. This was really like, you started out with just like, okay, I hope this worked.

Chenyka Ramos: And they tell you. So after 21, you'll know if it's working or not by the 21st day. Okay. This is a misconception people have too. People think that when you are doing chemo, your hair falls out right away. It does not. It doesn't, yeah, it does not fall out right away. And for me, I was doing chemo every two weeks, right.

So I had more time in between to kind of bounce back. My body was, you know, I was able to, kind of rejuvenate and all those things, which still working and living my life. But I was waiting around, you March came and I remember asking my doctor, I do distinctly remember this conversation.

It was about March. 'cause that was around my birthday. And I said, Hey, so is this working? You know? And, I had, my hair pulled back and I remember taking my hair out and she said, absolutely, by this point your hair has, should have been falling out and clump. 

Dr. Ren: 

Chenyka Ramos: She's like, you have a head full of hair uhhuh.

And I said, oh, wow. She said, yeah, by this time we would've had hair falling out and,and not like thinning, like clumps of hair coming out. Yeah. So, yeah, two months in, I still had a lot of hair on my head. I didn't experience hair shedding until, believe it or not, I didn't really start experiencing a lot of the shedding to where my hair was starting to get thinner and thinner.

it was until after treatment was over. Okay. Okay. When treatment ended, I finished treatment at the end of June. That's when I started between, like, I wanna say between those last like treatments, that's when I started experiencing more and more shedding. And even to this day, my hair fell out.

I would say I wind up preserving about 50% of my hair. 

Dr. Ren: Okay. 

Chenyka Ramos: But when I say that it's not balding, I don't have balding spots. My hair just thins. Yeah. So it wasn't, it's not as full and thick as it was, and thankfully I had a lot of hair. Full thick hair. Yeah. Yeah. So now even when I, take out the extensions and all that stuff, I still have hair on my head.

It's just thinner. and I'm working on it. I'll get back to where I was. but again, I didn't have baldness. I didn't have any patches, but, surprisingly that's when it started to fall out was actual treatment was over. It was like, my body was just like, we need to shed, we need to get rid of.

Dr. Ren: Right. I wonder if you would've kept capping like a few more week, would that have helped? I don't

Chenyka Ramos: I think that, again, being told that to anticipate the 50, you know, 70 to 50 per the 50 to 70%, it was. Any woman who has lost hair and like had it thinning.

It's shocking. It is, right? I don't have children. You 

Dr. Ren: don't see any 

Chenyka Ramos: hair coming 

Dr. Ren: off 

Chenyka Ramos: to her head. I don't have children. But what it really mimicked was almost like postpartum. Yes. Talk about what postpartum? The thinning around their hairline and the shedding their hairs. Just shedding, shedding off stop.

That's kind of what it mimicked for me. Okay. But it was just like, you know, it was a shock. It was a shock, but, I just kept reminding myself, you got through this far, you've done this much and at the end of the day what you said you needed was enough hair to braid up and that's what you got.

Right.

I know that's right. I know that's right. You know, it's still a win. and that's the other thing. I don't wanna throw out this idea or illusion that you're not gonna have, hair loss. No. You are gonna have hair loss. Yeah. These medications are extremely strong. You are, you are fighting one thing, but you're losing some other thing.

So I didn't just lose hair on my head. You lose hair everywhere. 

 my eyebrows were micro related, so I knew even if my eyebrow hair was gone, I would still have eyebrows. But thinning of my eyelashes that took a couple months to come back. Your body hair is gone.

That's probably the first thing that I noticed. So, you do notice changes in your body, no matter how healthy you are, no matter how strong you are, that does not matter. It's gonna happen, but it's just about, like I said, going through treatment, still having hair on my head and not looking sick.

That was 

Dr. Ren: really important. That was helpful for you, that helped you mentally. 

Chenyka Ramos: Absolutely. Yeah. 

Dr. Ren: Yeah. 

Chenyka Ramos: I think that was the icing on the cake and to see, you know, 'cause I got a lot of comments throughout the time. Even now, people are surprised to hear that I'm only three months out.

It hasn't even been three months since my last chemo session. and cancer free, I'm going on about six months cancer free. Woo. Yeah. So, people are surprised to see that, to hear that they're like, what? I would've thought you would've said two years or something. I'm like, no, I'm, this happened this year.

Dr. Ren: Yeah. Thinking that you will look sick. 

Chenyka Ramos: Absolutely. Absolutely. 

Dr. Ren: you're healthy. And you look healthy, so that's awesome. 

Chenyka Ramos: But I also knew going into it, and here's the other thing, like I said, with Hodgkin. The protocol is so clear, they know you're going to respond.

That was one of the things that was told to me, you are going to respond. You're gonna get better. We know this, we've done all this research on Hodgkin's people respond to chemo. I also was on the most updated, newest medication, so I knew that, more than likely, after those six rounds. I knew, I'm like, okay.

I'm gonna get better, I, in my mind, I knew I was gonna be cold capping for that extended time. so I knew that it wasn't gonna be something that just goes on and on and on. And I think that might be challenging for a woman that doesn't know, right? I don't know how long I'm gonna do this.

How long is this gonna be going on? I was able to plan financially, I was able to, do all the things that I needed to do to make this work. But I don't know what it would be like for someone else, Yeah. So that is also something you have to think about. And it is heartbreaking. It's absolutely heartbreaking that you have to think about money.

Money. It's absolutely heartbreaking that, it's not considered a necessity, that it's the medication throws you into alopecia, it's not something that you come in with a hair loss, As a result of the medication, this is a consequence.

And so it's just absolutely heartbreaking that, not everybody will be able to do this and it won't be an option, but if it is an option for you, please, please, please consider it. 

Dr. Ren: Yeah. Yeah. And then, with your research, did you find out that it might work, be more effective on people who have curly hair or what was the So, 

Chenyka Ramos: the video that I had watched initially, the women talked about their, textured hair and what they experienced.

And so when I did some research, read into it, there was some studies that I came across that did initially have, black women in the studies, but the black women did not complete the studies. Okay. I think the biggest challenge was the discomfort that they experienced with the cold cap on their head.

 listen, I'm a polar bear. I did not care. I listen, I came in with my blankets, you know, I jokingly said it's, it wasn't it's cold. But like I said, it wasn't so uncomfortable for me. Now that just might mean I have a different level of distress. Tolerance Exactly. Or something, 

But at that point I had been through so much already. It wasn't anything that was just so terrible to me. I get it. And it does wear on you over time. Yeah. But, I think that was one of the things that I found in my own research is that some of these women didn't complete the trials because it was uncomfortable.

Dr. Ren: It was just so uncomfortable. I know. I mean, you know, black people, we don't like being cop. I get it. I'm telling you. that's just, yeah. In our nature 

Chenyka Ramos: we don't cold. I get it. And not for no, and not, definitely not for six hours, you know, six and a half hours. So, I mean, listen, like I said, you have to be pretty dedicated to it, but I not special.

You if I could do this, you can do this. Anybody can do this if this is what you really, truly want. 

Dr. Ren: Yeah. 

Chenyka Ramos: I said I two things that I really, truly wanted. I wanted to preserve my hair and I wanted to continue working. I knew those two things were going to be essential in me getting through this with my mental health.

 just treating me as a whole person. I needed to continue in the normalcy of my life as much as possible. thank goodness I was able to do both of those things. Yeah. with realistic expectations, though. Right. Yeah. I had to be more realistic and as I was losing hair, as I was going through the process, it was just that constant reminder of, but you're not bald, but you're not bald.

 you still can put it, you can pull it up, you can still do things with it. Yeah. Now, months later, now I'm seeing, okay, it's growing back. it's growing back. It's gonna get to where it was once hopefully better. And, like I said before, I'm gonna be okay.

Dr. Ren: Yeah, yeah. Now, what would you say to the researchers out there that's still researching this and, we already know we need more. People of color in these studies, and that's just across the board for something like this as well, right? because like you said, you didn't find many women of color that had went through this even in your research.

 so we need to improve in that area. But as a patient, what would you have liked to see from the research? Like where are the gaps that were apparent 

Chenyka Ramos: to you? I think that not having an actual success rate, not actually having the outcome for people, for women of color in particular, who have, know, more coily hair, more curly hair, more coarse hair.

I just was fortunate enough to hear stories from people, know, all those different, as I'm talking to you, I'm thinking about it. From the penguin cold cap representative talking about his wife's experience being a black woman and saving her hair, to seeing these videos out here, to my own experience, you know, knowing that there are people out there who have tried it, who have had success, that look like me, that have similar hair textures, that meant the difference for me.

 I don't know if it's just like encouraging more women to, women of color to become part of these studies or talking about that and what's the incentive, what, what needs to happen there. But, It's important because we are being affected.

There are high rates, as you mentioned before, looking around in the infusion room and seeing women of color, Seeing women, different ages. going through this and seeing women who have lost their hair, who had no idea that this was a possibility for them. Mm-hmm. Heartbreaking for me as a patient, but also an advocate clinician, because all those, there's all those parts of me that are activated right in that moment when you're being asked by a woman, what is it that you're doing?

What is that? You know? And I'm like, oh, it's cold capping. I'm saving my hair. Yeah. Oh, how did you find out about that? Or what, you know, or whatever. And I'm like, giving all this information, you 

Dr. Ren: I mean, and that is really the point, right, of this podcast is to share the options that are out there with the community, like.

You should be well informed, right? When you're going through something, it's your right to be well informed about everything, all your options, and make that informed decision. How can we make that decision if we don't know anything about it? 

Chenyka Ramos: And I said to myself, I know I am not the only Afro-Latina, 38-year-old woman out in the world who's been diagnosed with cancer that does not wanna lose their hair.

I am not the only curly girl out here that is looking for another option. There has to be something out there for me. and I said, and from the start, if it helps or not helps, I'm going to talk about it. Yep. You know, I'm going to talk about it, I'm gonna find my way some way.

And we just look at how things work out the universe bringing this to me. You and I had this conversation and what did I say? Absolutely, I'll do it. Yeah. There's no doubt in my mind. Of course, I would, do this podcast and, join, your organization in this way because it's what you're doing is necessary for the community.

Dr. Ren: And look, this video is gonna be out there forever. 

Chenyka Ramos: Yes. 

Dr. Ren: I mean, so you don't like, this is gonna help people years to come. And we don't know where the research will be then. You know what I mean? Hopefully we will get better in researching this, and making this process even more. better, for patients, right? Because I think it's super important. like you said, mental health is so important when you're going through something like this, and that is. like you said, wanting to look like yourself. You didn't wanna like, not look like yourself. And Yes. You won't look like yourself anymore if you have to lose your hair, right?

I mean, andit messes with your spirit, 

Chenyka Ramos: and I just think that there's, so that, you know, it really came down to like surrendering, for me a big piece was I have to surrender. And that's not easy to do. and surrender. But this piece of like, I am so powerless over all these things.

I'm powerless over the fact that I got cancer. I'm powerless over the fact that I didn't get diagnosed for months. I'm powerless over the fact that I have scars on my body from these surgeries, but I'm not powerless in how I treat myself during this process. And if I had the option to take some control, I'll, that's what we did, 

Dr. Ren: Yes. Oh my goodness. I feel like that had to empower you, like Absolutely. I'm sure that was so empowering and you needed that empowerment. You needed to take control of some piece of this. Absolutely. It was so out of your control, even being diagnosed. 

Chenyka Ramos: And our hair, it's not, it's one thing to, first of all, to tell a woman your hair will grow back.

There's so much in that statement, right. That doesn't account for how they're experiencing it in that moment of not having hair. And we all know, hair in your head does not grow like that. doesn't grow overnight. It takes time. And for some people it takes more time. Yeah. But it's not, superficial or materialistic to like to have hair on your head.

You know? I think that the choice of what you do with your hair is your choice. And when cancer comes in and. It's devastating in this way. It takes that choice from you. So for me, my personal choice is not to wear wigs. I don't wear wigs in general, and I didn't wanna wear a wig. If I lost my hair, I don't think I probably would have worn a wig, to be honest.

I think that would've made me feel less like myself. Mm-hmm. But that's just me, you at the end of the day, I knew that, I was gonna give this a shot. I owed it to myself. I would have been so frustrated, so incredibly, devastated with myself if I wouldn't have tried. Yeah. 

Dr. Ren: Yeah. You have the knowledge, have the information, and so you gave yourself a chance. 

Chenyka Ramos: Absolutely. I think that was a piece. Doing this podcast, podcast. I talked to, my doctor about it. I said, you know, I got asked. She jokingly said, she's like, you're who I am as a person. She's like, you need your own podcast.

You just need to be talking in general. I'll start with this one. but I said, that empowerment piece is so important and that level, I'm not gonna do it unless I'm prepared to be a hundred percent transparent and vulnerable about everything. And so, you know, here we are. But I think the takeaway, if you're listening, and you might be in tears right now because this is emotional and you may have been where I was.

I hear you. I, I dunno exactly what you're going through, but I can imagine. But give yourself fighting chance. 

Dr. Ren: Yes. Yes. Don't let fighting, don't let anyone say it's just hair. No, because it's not about you being vain. It is not about you. It's yours. It's yours, it's your hair, And you keep it 

You want, you know what I mean? So don't let talk down to you. If you want to keep your hair and you wanna fight for yourself 

Chenyka Ramos: and nothing is impossible, you know, how many times the doctors and you know, doctors and the nurses were like, wait, what? You got that you got? How did you get that?

How did you do? Because I called. I called people, I made the phone calls. I asked questions. I kept calling. Right? And so you do that because there's no one else in this world that's gonna fight as hard for me as me. Come on. Nobody. So I was willing to do it, and if I had the strength to do it, and I had the thank goodness the brain fog wasn't, you know, wasn't too bad.

I, I could get in there and call and ask questions and things like that, but there are so many wonderful people out there. I've just, I came across so many wonderful people who just helpful From, penguin cold caps to subsidy, to hair to stay. They're amazing over at hair to stay. Wonderful people.

So helpful, easy process if you qualify. Easy process. Yeah. all the wonderful people at my oncology office that I will be seeing for the next five years for follow up. all those folks that just gave me little information here and there, and I would take that information and I just kept, you know, I built up like a little database for myself.

Yeah. and that's what it's about because, unfortunately when you do get diagnosed with something like this, you are going to have to advocate. You are going to you, whatever you put in is what you get back. 

Dr. Ren: Yeah. I mean that's with anything, that's with any diagnosis. Right, encourage everyone to fight for themselves with any diagnosis, 

Chenyka Ramos: but I think that piece and that, maybe that's the conversation for another topic, but I think the piece was like.

 there, yes, there are people there to advocate for you, but you still have to put it in. You still have to do the work. Yeah. You know, you still have to get the information. So I mean, I made it work. I made it work because I was determined. And also I have a really amazing friends and family who were going to support me.

 either way, either way they were gonna figure out how they were gonna help me. And like I said, I just had someone that could take off time to come with me to do the capping and, friends that would, suggest products, friends that were, you know, I had a, a wig on standby if I needed it, whether I wanted it or not.

My best friend was like, oh, we're gonna make you a wig if if it doesn't work and you need hair, you know, so I had an amazing, it's a village of people. Oh, yes. it really does. And I'm just really grateful. So shout out to them as well, because They were just such a blessing to me throughout the process, and they gave so much, they poured so much into my cup that I was able to do these other things.

I was able to, advocate for myself in the way that I needed to because I had such a great backing of people. it's a lot. it really is a lot. I just encourage you, to do the research. Yep. make the phone calls, ask the questions. Hopefully I gave you some info today.

A lot of content today of what questions to ask. what kind of hair do you have, financially some support there, figuring out some resources, talking to your oncologist or going through the insurance, seeing what, what they'll pay for because their insurance companies are, they are starting to recognize co capping.

They are paying for it. Not enough of them. yeah. But they are starting to recognize. Uh, the necessity so that this is a medical necessity. Mm-hmm. Right? Because they don't pay for stuff that's not, you know, they don't find necessities. asking those questions too. super important. 

Dr. Ren: Thank you so much Nika, for your inspiring story.

I, am truly inspired. I hope someone else will be truly inspired. I'm sure they will. we will be, adding to the, post Mika's information. She is so open to, helping someone else in this space. so if you need to reach out to her, um, she's gonna allow you to reach out to her. and hopefully we'll hear you, on other platforms because your story is so important.

So we wanna get your story out as far as we can. perfect. Yes, I think that. I really do think this is, important for women of color to know. and not just women of color, any woman, but it is, I'm saying women of color because I feel like we're, disproportionately affected a lot of times by cancer, different forms of cancer, and then we don't have all this knowledge, right.

That other people might have. And so we wanna make sure we're sharing the knowledge. and informing our community. So 

Chenyka Ramos: thank you. Absolutely. Absolutely. and ultimately I'm doing what I love and that is the passion for therapy and helping people. I've been doing this for over a decade now, and I'm just so glad that I'm past this hump in my life and I'm moving forward to continue in my practice and do what I love every single day.

 and continue to share my story because my clients have also seen me through this as well. and, colleagues and all of that. So I am little by little getting the word out about, the process and you know what I went through, including the Kohl's C. So thank you for getting this information out there.

And I know that this is gonna be helpful. I know someone's gonna stumble across this, and get all the information that they need. This was made for you. So thank you Dr. Ren for your time and the work that you're doing in the community. It's awesome. I look forward to hearing more of, know, podcasts coming from you and all the extraordinary things that you're doing as well.

Dr. Ren: Thank you so much. All right. maybe we'll bring you back and to talk about, some of your work as a therapist. Absolutely. I think that's super important too. The, mental health research is one of our focus areas as well, and we know there's so many things that we're finding out every day that affects our lifestyle and our mental health.

And hey, we want our community to understand that too. So maybe we'll bring you back later. Okay. I'm 

Chenyka Ramos: open 

Dr. Ren: to it. 

Chenyka Ramos: Sounds 

Dr. Ren: good. All right. Take 

Chenyka Ramos: care. All right. Thank you. Bye