What happens when a 33-year-old mother, PhD, and wife, who has meticulously planned her life, is suddenly diagnosed with breast cancer? This episode of Before Our Visit Ends features the powerful story of Kayoll Gyan, a nurse scientist who shares her deeply personal breast cancer journey and faith. Kayoll opens up about the shock of finding a lump during a routine physical, the agonizing wait for a delayed diagnosis, and the moment her world stopped in a Lowe's parking lot. She offers a raw, unfiltered look at the brutal realities of treatment and the surprising discovery that life after the emergency is over can be even more challenging.
In this detailed conversation, Kayoll walks us through every step of her experience. From the initial physical exam that revealed a lump to the three-month waiting period that allowed the tumor to grow, she highlights the critical importance of self-advocacy and getting a second opinion. We explore her difficult decision to forgo freezing her eggs to begin treatment immediately, and the physical and emotional toll of coping with chemo side effects from ACT therapy, also known as "the red devil." Kayoll shares the practical tips that helped her manage severe nausea and pain, and the vital role her friends, family, and a meal train played in her support system.
The discussion also sheds light on the unique challenges faced by young Black women with breast cancer, a topic that has now become the focus of Kayoll's research. She speaks candidly about her life after cancer treatment, navigating the cognitive effects of "chemo brain" that have altered her ability to work as she once did, and the process of accepting her "new normal." A central theme throughout is Kayoll’s unwavering faith, which served as her anchor. She explains how journaling, prayer, and "protecting her peace" by avoiding Dr. Google were essential for managing the fear of cancer recurrence. This is an intimate and honest account of resilience, the power of spirituality in healing, and finding a new purpose in the wake of a life-altering diagnosis.
Introduction
Eunice: Hi, I'm Eunice. Welcome to Before Our Visit Ends, a space where we take a moment to get to know the whole person beyond their cancer diagnosis. Along the way, we'll gain meaningful insights on living a life that is not defined by cancer. These stories are sometimes heavy, sometimes unexpectedly light, but always honest.
During this podcast, my guests and I will be sharing personal experiences and discussing medical information. That said, the information we share is based on our own lived experiences, perspectives, and personal understanding. This podcast is not intended to replace medical advice. Please consult your own healthcare provider or licensed practitioner with any questions or concerns about your diagnosis or care. Before our visit ends, it's not responsible for any outcomes related to information shared in this podcast. Each episode is shared with the hope that someone listening might feel seen, better understood, or more informed. And with that, let's begin today's episode.
Today we have Dr. Kayoll Gyan on our podcast and really welcome Kayoll. How are you doing today?
Kayoll: I'm doing great. Thank you so much for inviting me.
Eunice: You're such an exciting guest that I'm really excited to hear about your background and things like that. So before we get started, I always ask all of our guests, can you tell us a little bit about yourself, where you are in life right now, what life looks like for you in terms of children, marriage, and really just get to know you beyond the medical aspects of the conversations that we'll get into.
Kayoll: Well, who am I? I am a mother. I have two sons. Ezra is seven. Caleb is five. I am a wife. I've been married for almost nine years. We've been together since 2004. And my husband is Frank. And important to me is my faith. I'm a child of God. That's a big part of my life and my identity and how I carry myself and see certain things in this world as well.
I am an avid sports person. I love sports. My favorite sport is basketball. I always said if I had the energy or the strength to do another career, I'd be a sports reporter or something like that. But I really enjoy watching all kinds of sports and learning new details about the players. So if I'm not doing work or anything that requires my full attention, you can definitely see me watching a game or something with the kids.
Eunice: I have a curveball question for you because you love sports. And I am one of the few people that is a track and field fanatic. Do you like track and field?
Kayoll: The extent to which you may like it, but I try and follow it. Okay, what's your question?
Eunice: No, that was my question. I was just really curious because I know you're into so many sports, so it's not that many times that I meet people that can talk track and field and I'm always looking for someone to talk about.
Kayoll: So who are your favorite athletes right now in track and field?
Eunice: It's always going to be the Kenyans.
Kayoll: Why not? The long distance. I think it's, isn't it because of the altitude in Kenya that athletes train at that really, that's amazing.
Eunice: That is amazing. Faith Kipyegon, Beatrice. A lot of people that I can name, but I'm also the sprints. Sydney McLaughlin is doing so great.
Kayoll: Does she train in Kenya?
Eunice: No, she's a 400 meter hurdle specialist.
Kayoll: I'm familiar with her.
Eunice: She's just amazing. And the reason why, and I know your faith is going to come into play again later, I'm sure. She's really faith-based and a lot of her accolades and things like that, she really gives a lot of glory to God. And so I was just curious if that's somebody that you're very familiar with in the track world.
Kayoll: I definitely am. I love that she's successful. I love how she carries herself and the things that she accomplishes. She's amazing. And to be that consistent every four years, the consistency in between the four years to still be dominant at that level, it's amazing.
Eunice: It really is. I know you talked about your family. I also know your sister is going to med school, which is exciting.
Kayoll: She graduated, actually.
Eunice: Oh, she graduated med school.
Kayoll: She is at Einstein now in residency in OBGYN. And so Dr. Galbraith in the house, [Could not verify with context]. Quick shout out to her. I'm so proud of her. She's so smart.
Eunice: I'm very, I'm really amazed and I can't believe the time is already gone that she's now done already. It's awesome.
Kayoll: And she makes it look so easy. I tell her every day, I'm so proud of her.
Getting to Know Dr. Kayoll Gyan: Faith, Family, and Background
Eunice: Along those lines, I always love to hear about people's backgrounds. And because I do think that your childhood influences and shapes the person that you become and then beyond that in terms of how you navigate certain things in life so for your case how you navigated the cancer diagnosis so can you just tell us a little bit about your background.
Kayoll: I am Jamaican. I was born in Kingston, Jamaica and grew up there and then came to the U.S. I grew up in Brooklyn, I came, I was still young, but going to church was a big part of my growing up. My grandmother, my mother made sure that I was in church. Sundays, Mondays, Wednesdays, Friday night, youth, all the things, we were there.
And so I grew up always with awareness of spirituality and God, and that there's more to life than what meets the eye, the physical. And that there's a spiritual realm as well that is also important to give attention to as we grow. So I kind of grew up with that awareness.
My mother, any Jamaican home, school is very important. So I always did my best at school, did my best to be a straight A student, definitely had some Bs. I remember taking my tests and coming home, bringing my mom the paper and it'd be a 99 and then she'll ask what happened to the one point. Really, okay.
Eunice: That one point matters.
Kayoll: That one point matters. So school, education was always important in my household. I grew up for a long time with just my mom and then with my stepdad later as I got older. But great, great environment. So when I got diagnosed, I definitely relied on my faith a lot in that time. It was also surprising, too, because you are taught, you go to school, you work hard, get married, have children. Than at the point when I was diagnosed at 33. I was just kind of getting into the flow of motherhood and balancing work life with my career as well.
And as a Christian, you can forget that sometimes things don't always go as planned or that suffering is still a part of everyday experience, even if you do what you're supposed to do. And up to that point, I had graduated my PhD in May 2016 from UNC Chapel Hill, Go Tar Heels. And then that September I got married. Then we moved to Boston for work for my postdoc. Then that December, 2016, got pregnant, had Ezra the next year, still in my postdoc. A couple another year, got pregnant, had Caleb. And so life was just moving, it was just one thing after the other. So when the diagnosis came, I was very caught off guard because I didn't expect it. No one in my family had cancer, to my knowledge, I should say, let alone breast cancer. It was just no one that I knew dealt with that.
The Shock of a Diagnosis: A Delayed Discovery at 33
Eunice: How did you find out? Were you doing a breast exam? What made you or someone aware that this was happening?
Kayoll: It was, I went in for my annual physical. And thankfully, I did that. I went in for the physical, my doctor was just doing the manual breast exam. And we were just having a conversation as she was doing it. And then she did the right breast, then moved on to the left breast and then felt a lump, I guess. And she asked me had I noticed that it was there and I said no I didn't I didn't notice at all that it was there. And not a big deal, continued the exam. We thought it was a cyst, but she recommended that I go for an ultrasound.
And so I went to the ultrasound, I think the next month I went for an ultrasound and then in the ultrasound they still couldn't really tell what it was. My initial appointment was in June, then the ultrasound was in July. From how it looked, they didn't really seem that concerned. It didn't seem as if it was cancer. They couldn't tell. And so they said, come back in three months.
Eunice: So they didn't biopsy it at that time?
Kayoll: No, they didn't biopsy it. It didn't seem as if it was urgent to even biopsy. And in my mind, I'm thinking no one in my family has breast cancer. So theoretically, I don't have a genetic predisposition for this. So that's the farthest thing.
Eunice: And you're so young.
Kayoll: And I'm only 33. So given all those things, I didn't think that there was a need to do a biopsy either. And so they said, come back in three months. And if it changes, come back sooner. And so I left, went about my summer and I had plans to travel and all of that. And so three months was September and it was right around the three-month mark that I actually noticed that this thing hurts. And I felt like it was getting bigger as well.
And sure enough, I was actually interviewing for my current position. And it was my wedding anniversary, actually, that day, too. And I was in the interview, and I was like, man, my breast hurts. And then I made up my mind, because we were coming to New York that weekend for another wedding for a family member. And I said, when I come back, I'm going to make an appointment to go, because my breast hurts. And it shouldn't be hurting. And so that was kind of the impetus that started all the tests to go and actually get a mammogram, which I didn't do before. So I tell anyone, if you find something, just do everything. Do a biopsy, do a mammogram, because I don't even think a mammogram was recommended to me at that time either.
Eunice: At the three-month time period, what ended up happening? At three months, you went back and then they immediately did a mammogram?
Kayoll: So they scheduled me for the mammogram and also a biopsy. So they did that. And then it was just waiting for the results to come back in September. And actually how I found out that it was cancer, it was from my primary care provider. I was in Lowe's, I needed a new fence and I went to Lowe's to buy a fence, and Frank was in the car and I was online in the store and I saw my phone ring and I saw that it was a doctor's office and I don't know, my heart dropped.
Eunice: Had you had in the back of your mind, could this be?
Kayoll: I was thinking it. I was definitely thinking it because the way how quickly it got bigger. I was like, I don't think that that was normal. And so it was definitely on my mind that it could be cancer. So when I got the phone call and then I left the store, I was in the parking lot, and she told me she saw some preliminary results and that it does show cancer.
I don't even know what happened. My whole disposition must have changed because Frank left the car and came to me and was asking me what was happening. And I put the phone on speaker so he could hear the conversation. And I got back in the car at the end, went home and I went to the bathroom and I just cried. And I was just, oh my God. And then he came in and we just cried.
And then after we cried for a few minutes, we were like, whatever this is, God will bring us through. And then our disposition just changed after that. And then I was, OK, this is what it is. Then I just have to go through it. I have to go through it and see it through to the other side.
Navigating Next Steps: Treatment Plans and Fertility Decisions
Eunice: When did you get the more in-depth results? What was the next steps of knowing the stage?
Kayoll: So that was the thing, too. So I was being treated at one hospital here when my PCP was connected with a different hospital than the one that I ended up getting treated from. And so when she told me that the results, some of the results came in and it was cancer, a week went by, another week went by and I didn't hear anything. And I'm just, this isn't right. Somebody give me a call, let me know.
And so I ended up switching where I was being treated at. I haven't even started treatment yet. But the fact that it wasn't communicative with the breast oncology department for that hospital, I was just, I don't like just how this is starting off. So I ended up switching.
So I did my postdoc here in Boston. And I emailed my mentor and I told him, hey, I was just diagnosed. Should I reach out to this person who actually interviewed me for my job a few weeks later and ask her if I could be seen by her? And he responded, yes, he was actually going to tell me her name to go and do that, too. So he sent an email, connected the two of us, and then she emailed me directly. And I told her what was happening. And she told me what to do, how to get my results on a CD so that I can bring it to the hospital for that first appointment.
Kayoll: And I think that was a Friday. And then by that Wednesday, I was being seen at the hospital.
Eunice: How did you navigate the whole process? And we'll talk about what the treatment was, but I'm curious if you had a nurse navigator to help you through this.
Kayoll: I believe I did. And then I also had a social worker as well that helped me. And we had monthly check-ins and calls during the treatment course.
Eunice: By Wednesday, you get seen. What was the decision in terms of your treatment course? Did you even have, did they have a plan at that point? Or was it more so we need more tests?
Kayoll: So by the time that I was being seen there, I think the results may have gotten back from the initial hospital that I was being seen at. And they had me scheduled to go and do another ultrasound. And I think I did a mammogram there. So I kind of went through the same process again, just to confirm what it is that the initial hospital found. And so within a couple of days, I had what my treatment course would look like.
And the question about fertility came up as well right before starting. She asked me, do I want more children? If so, freezing my eggs, making an appointment with that department to freeze my eggs before starting chemo. And that was a pretty hard decision because at the time when I was diagnosed, it was around the time that I would have been trying for my third. And so that was pretty big on my heart.
And so I left, I told her I needed some time to think. But when I got home that night and I looked at my boys and I was, you know what, I don't want to delay treatment any longer. And I want to make sure that I do my best to be here for the children that I do have. And I felt like I was kind of behind with getting started considering this was June and now I'm into September, October, with all of that time. So I called them back that night and I told them, I don't want to freeze my eggs. I just want to get started with the chemo. And then by, I think the next day or a few days out, I started.
Confronting Chemotherapy: The Reality of "The Red Devil" and Its Side Effects
Eunice: How was chemo?
Kayoll: It was terrible. Oh my gosh. I had ACT therapy. What they call it, the red devil. It was terrible. Nausea was the biggest thing. Oh my God. I had a lot of nausea, but the only thing that seemed to help me with the nausea was constantly eating, making sure my stomach had something in it. It felt like pregnancy nausea. Cause when I was pregnant, if my stomach was empty, the pain was a lot more than if something was in my stomach for all the acid and all of that to do something with it. So I felt like it felt like that again, but just 10 times worse on the chemo.
And then also, of course, the hair loss and pain and feeling fatigue was a big part of it too. When I got to the second part of the treatment for chemo, the primary symptom was pain and fatigue. So I had to really work with some friends and also my friends who were breast cancer nurses. They helped me a lot with managing my pain medication to make sure that I took it when I was supposed to take it and that I didn't wait too long of an interval so that the pain wasn't so much.
Eunice: I think one of the main things that I always try to tell patients is a lot of these pain medicines were made for people who are going through a really hard diagnosis like cancer because there's always a lot of fear in terms of taking pain medications and it's okay. And explaining, there's a difference between someone taking pain medications because of an addiction versus you're in a lot of pain and you need to have relief.
Kayoll: That's true. That's true. And the other thing, part of that too, is when they explain it to you how to take it and you're at the office, you're, yeah, that makes sense. But then when you go home and you're actually supposed to do it, it's, what did she say again?
Eunice: Which one do I take first and which one is the breakthrough and the long acting.
Kayoll: Yes. Even for me it was a bit confusing so having some friends to call was a big help to me in addition to my own the hospital as well, but definitely leaned on my friends who were in the field as well for that.
Eunice: That's great. Did they end up telling you, do you remember what the stage was?
Kayoll: Stage two. I saw some places stage two, I saw some places stage three, but it was stage two that I was told.
Beyond Chemo: The Journey Through Surgery and Radiation
Eunice: You had, did you have radiation?
Kayoll: I did. I had chemo then surgery and radiation. I had 25 rounds of radiation.
Eunice: I'm sure that was really tough too.
Kayoll: You know, I actually, the hardest part of radiation was just getting my arm in position for the treatment. I felt like we spent more time getting me into position than actually receiving the treatments in the machine. And it was painful because from the surgery, I had a mastectomy of my left breast. And then also some lymph nodes as well were taken out. And so my range of motion was changed significantly. And but I'm actually thankful for needing to do radiation because it forced me to move my arm in those positions that were painful, but it actually helped with my range of motion.
Eunice: Do you still have pain in that area? Do you have any physical?
Kayoll: Sometimes. It's kind of, there's a nerve. I feel like there's a nerve there that if I crouch in too much, I kind of feel like it's a cramp that's coming in from that one particular area. But thankfully no I haven't had any issues with swelling or anything like that. I work out, I lift weights. My range of motion, I don't complain. It's not as much as my right side but it's really good.
Finding Strength: The Role of Faith, Journaling, and Community
Eunice: Oh that's good. That's good. I'm curious when you were going through treatment, what are some of the things, because I know you mentioned when you got the diagnosis you and Frank took time, you cried and then it was sort of like okay, we have faith, we're gonna get through this. Throughout the process of treatment what are some of the things that kept your spirit up? Did you guys try to do anything for fun to take your mind off of what was going on or was a lot of the focus really like we're going through this treatment, once this is done then we can think about something else?
Kayoll: That's such a good question. Did we do anything for fun? For me, I think my main focus was controlling what I could control, like having faith, so doing things that helped me to have faith in that situation. So definitely reading my Bible, listening to scriptures, listening to sermons on healing.
Staying connecting to my pastors and in that way. My mentor actually, she does research on spirituality in African-American cancer patients. And she was actually doing a study at the time. So I fit her inclusion criteria. So I was interviewed by her to be in the study. But from outside of that, she mentioned to me for me to keep a journal and to just write in it when I had something to say or I'm wrestling with something in my mind or in my spirit or something. And I couldn't necessarily talk about it or communicate about it, but just to write it down in that journal so that I can come back to it later.
And so that really helped me a lot. And I didn't do it every day. I didn't need to do it every day, but when I did, I felt like it was really helpful. And then even now as I'm out years later, I'm able to go back and kind of see where my mindset was, where my emotions were during that time. And it's very interesting now, being out of treatment and looking back and to see how I was, the thoughts that I was thinking at that time and now where I am today, how I've progressed through those thoughts and through that day or that event.
Kayoll: So journaling was a big help to me. And I recommend that to other people who are in treatment now. And friends, my friends came to visit me. That was nice. I'm in a sorority. And so my sorority sister came to visit, some other friends came to visit. And even though most of my longtime friends are in New York and so they're not there. They had a meal train. So they supported from how they could. So every week someone took turns ordering meals for the family and that was really a big help because who got time to cook going through this? Nobody. So that was good.
So having visitors, close friends was good as well. But Frank would take me out. We'd go for car rides just to get out the house, go for walks, things like that. Make sure I had fresh air. We'd still go out to eat on days that felt good. So just small things like that. I don't think we did any major events or anything like that, but reasonable things.
Eunice: Sometimes just doing things like that is just so helpful to just lift your spirits and so anything that you've done that is helpful I think it's always something that other people might find helpful.
Kayoll: Music was a big part of it too and I had a playlist of things that I would listen to so music was a big, big part.
Eunice: One of the things that I feel like is hard at least for me because I journal as well is going back and looking at what you wrote. Was that hard for you to go back and read it? Because I know when you're talking about journaling and seeing how you've progressed through all these periods, for me at least, and I don't know how other listeners feel, but sometimes it's still hard to go back in those moments. So I'm curious how that is for you.
Kayoll: That's a good question. You know, when I look, sometimes I say, man, I wish I did more. I wish I wrote more days to kind of add to it. Because it really is just a moment in time. And it was just such a surreal moment. I was in treatment, but honestly, there are days that I was sitting in the chair with the chemo going in me still in disbelief that this is what was happening to me. So being able to go back and read and to actually be like, yeah, this really did happen, kind of made it real even more. I don't know if that makes sense. But for a long time, even after my first, second treatment, it was just so surreal. I could not believe I was diagnosed with breast cancer.
Eunice: It's still interesting. And I guess maybe no one has an answer for you. And I don't think we ever have answers to these things of there is no genetic mutations or anything for your cancer that was ever noted.
Kayoll: No. I did genetic testing and everything came back negative.
Eunice: It's just some of those things that you can't even have answers to.
Kayoll: Yeah, which I probably think that for African-Americans, for Black people, I wonder if what is being tested should be expanded. And there's a researcher as well that's who's actually starting to do that. I think that's probably would be more beneficial.
Eunice: Are we testing all the things that we should be testing to really understand?
Kayoll: Exactly.
Life After Treatment: Embracing a New Normal and Cognitive Changes
Eunice: Just switching back a little bit about post-treatment, what was it like to be done with treatment and how did that feel? Okay, now I'm done with treatment. What does this look like? How often do you see your doctor? And you're kind of, do you continually get tested or assessed or continue with your oncologist? How was that?
Kayoll: It's like a fire. When there's a fire in a house, the firefighter, all hands on deck, everybody is there trying to put out the fire. That's how I view chemo, that experience of chemo. Everyone is there. Everyone's checking in with you, even from the hospital or your friends, socially. Everyone is calling. How are you doing?
Then you move from chemo to surgery. Okay, how's that? Are you going to do a mastectomy? Are you going to do a double mastectomy? Are you going to keep your breast? Okay, you do the surgery. How are you healing? Doing all of that. Then you move to radiation. And as you come out of it now it's like okay you're fine. At least from my friends or family perspective everyone is, okay you're fine. The fire is put out, in a sense. And so everyone can kind of calm down now and go back to their normal routine. The emergency is over.
But I find that that's the time where patients experience maybe impacted more so by the psychosocial effects of having that cancer diagnosis and going through that treatment and even managing the symptom burden that comes as a cost of the type of therapy that people receive.
Kayoll: And even more so, that is when I would encourage people to still reach out if they need social work or to talk to a therapist or to have that communication. Yes, for some, theoretically, the cancer is gone, but you still went through a traumatic experience.
And so for me, I still check in with my appointments with my doctor. I was on endocrine therapy. So initially I was going in every month for a shot, but then we changed the doses. So now it's every three months for that. So it's a bit less intrusive of my work and things like that. So it's less frequent, of course, considering the cancer is gone.
And now it's more balancing going back to work with any residual side effects or things that you may not even have known is different about you. And how do you do those things? And that's kind of with the space that I'm in right now. With my work, it's a lot of writing. It's a lot of thinking, organizing, synthesizing literature, needing to focus.
Kayoll: Have a long attention span for certain things. And I've found that those things have changed for me. So how do I work now and be successful in my role as a nurse scientist while I'm dealing with fatigue or shorter attention spans. And not only that, but then also balancing being a mother of five and seven-year-olds and then being a wife and then the other physical issues that come with the treatments that you've received as well. So yes, the fire is put out, the cancer is gone. But now it's, OK, how do I live and thrive with what the side effects of the treatments are?
Eunice: It's like you're before diagnosis, then the fire. And then afterwards, it's your new normal. And now you have to get used to this new normal. And I'm sure it's really hard because now you know what it was before and what it is after. And you said something that it's really powerful to think about the post-treatment about, that's when the support shouldn't really end. Because there's still a lot of support that you need, because I think from the perspective of the oncology perspective, and maybe not everyone just thinking about it, it's like the patient has completed treatment, we'll see you in a couple of months. But what a day to day looks like can be really hard after treatment.
Kayoll: It definitely can. Support is definitely important. And I guess figuring out where you want to receive it or the type of support you need and then being consistent with reaching out or doing those things. Even for me, I was over this weekend, I had a few deadlines coming up and I was just feeling overwhelmed because I'm used to being the type of person who if I have a deadline, I will stay up multiple nights working through the night on things.
And I was talking to my mentor about it and she was like, you can't do that anymore. Your brain is wired differently now. We just got to work through it and figure out how this new brain works. And I was, wow, you're right. I'm trying to do the things that worked for me before chemo and physically I'm not the same person. And so even knowing that difference and still operating in my old self was bringing me anxiety because I'm just not able to do those things and thinking, oh, my gosh, what is wrong with my brain? So the cognitive effects of of going through treatment is definitely serious. And there's lots of research on it, but still not necessarily enough to know how to support patients with dealing with those side effects.
Managing the Fear of Cancer Recurrence Through Faith
Eunice: I'm curious about what it feels like the knowledge, post diagnosis. Is there worry there? Will there be a recurrence in those aspects of it?
Kayoll: I don't think any cancer patient doesn't think about that. And I definitely, so for me, I believe that my healing is complete. And so I believe that it will not come back. And so that is my faith in being healed. But do I have days when the thought of what if this comes back? Yes, I do. And then it's more so for me to kind of recenter myself and realign myself with my words and my thoughts and my beliefs and expectations and what I want to happen to push those thoughts out so that I can move forward in a calm way.
And that was something that I had to learn while I was in the treatment was I had to protect my peace. And what that meant for me as a nurse scientist and a researcher, no Dr. Google, no Mr. PubMed. I relied solely on the information that I got from my oncologist. I tried my best not to do so much research that the information overwhelmed me and would fill me with what ifs and uncertainty.
Kayoll: So that's for me why I relied so much on my faith because I trusted my physicians enough to lean on them for what treatment I needed to go through, what physically I needed to do to get rid of this cancer from my body. But then I also believe that faith and medicine works together. And so how could I feed myself in a way that I had peace and hope to believe that the treatment was working and then to be in the mindset that my healing was complete.
And it was funny because one of the things that I struggled with was being a planner. And I always say that I would make plans of how I thought things would go. And when they didn't go that way during treatment, it would give me anxiety and fear that, oh my gosh, is this treatment working? For example, I, one of my, I think it was the mid-mammogram that happens when you're almost close to treatment. So I think I had finished maybe six chemos and I went in for a scan just to see the progress. And I was believing no cancer is going to be found. And so I did that. And then we got the results and it showed that the tumor had shrunk significantly.
Kayoll: And yet I left that appointment feeling so disappointed because in my mind, I'm like, no, it's supposed to be all gone by this time. And it really forced me to realize that, no, this is not something that I can plan. Your treatment journey is going to be ups and downs, it's not a straight line. There's setbacks, time in itself heals. And so that was probably the biggest lesson that in memory, that's not to me to kind of realize that it is not my plan that is going to work or get me through this. That my job in this is just to believe and have faith and then to leave the rest up to God. Whatever healing is going to look like for me, I'll find out when it comes, and I can't force myself to the finish line to get there.
Eunice: That's really powerful. A lot of times, for most of us, especially successful people, and I think for most people in general, but in order to be the person that you are to have a PhD and be so successful in your career, we have to have a type of mindset of planners and how things are going to go. And so, it definitely forces you to think that, hey, I can't really control this. And I think overall in general, a cancer diagnosis, when it's so shocking when you're for most people at such a young age, it's like I don't have control over a lot of things. I feel like it makes you realize that.
Kayoll: It definitely does. Not just for cancer. I feel like for me, this came about from a cancer diagnosis. But I think about all the other people in the world who is struggling with something. We all have something in this life that we have to go through. For me, it was breast cancer. For some other people, it's mental health issues. Any type of sickness it could be financial but whatever, we all have a struggle, we all have a trial that we will go through in this life. And we can do our best to of course be active and proactive in getting through it but at the end of the day, we also need to have a able to sit in a place where we can be in the midst of that trial and still have some type of peace within ourselves as we're waiting for it to end.
Eunice: Did you find a community of similar people that you maybe also connected with? I know you said that you really trusted a lot of the advice that was being given and the plan that your team had. I know for some people there is communities and there's all Facebook groups and things like that and they get recommendations. I'm curious if you ever had community that you found from there that helped at that time or that continued to help of maybe people who are your same age, parent, mothers who have similar faith, if you've gotten friendships from there.
Kayoll: That's a great question. And I thought about joining a support group. I even, I think I logged into one virtual one but I ended up not joining any and the reason was because I wasn't sure what information I would get from them and if I was ready to receive it at that time in treatment. I think emotionally I was still a bit fragile.
Kayoll: And support groups are great. Don't get me wrong. But at the same time, it can be so many different people from different points in life, different experiences. And I didn't know if I would hear something that would crack the faith that I was desperately trying to hold on to. And so it kind of went back to that protecting my peace type of thing. So I kind of was very on guard with who I put myself around during that time and the type of information that I would be receiving during that time.
But the funny thing is, too, now that I'm in survivorship, I have just been connected with so many women who are in treatment. And now I'm able to be their support in a way, which is great. Being able to have a conversation with them, answer any things that I can recommend, even connect them with my own friends who are nurses who work in breast cancer to help with managing their medication, their pain, the side effects. So I'm able to be that for them, which I'm thankful for, even though at the time I wasn't necessarily able to join social support groups that were filled with other breast cancer patients or survivors.
Eunice: I think what you need at different times is different. Offering support after you've gone through the diagnosis and even receiving support from someone that's gone through it. I think it's different than sometimes when it's everyone that's going through it at the same time, because everyone is looking for something different. And sometimes you can absorb the energy and with anxiety, people are coming in with their faith. And so sometimes that's really hard. And you already have so much from family emotions and friends emotions and trying to be the strong one. And then now you don't want to add in someone else who's also anxious that you're looking for support from.
Giving Back: A New Calling in Research and Advocacy
I have a question about really now what life is like and your goals and what that looks like. Obviously, you have your PhD. I'm sure you want to do more publications. But I always just love to hear the things that bring you joy and the ways that you're just continuing to celebrate life after going through such a tough diagnosis.
Kayoll: Things that bring me joy, that is something that I am trying to be more intentional with doing instead of just being so focused on work all the time and being so serious with that, realizing that I need to do things to make me laugh more or have fun more in different spaces. So trying to be more intentional with that.
In terms of my work, I am now shifting the focus of my research to look at the role of spirituality in young African-American or young Black cancer patients, their treatment experience.
Kayoll: It's something that I was actually doing before I was diagnosed, but it wasn't the primary focus of my work. But now wanting it to be more, take the forefront for that. And I see that as my way of contributing to the literature for a population that looks like me. As we know that the number of young women with breast cancer is increasing. I think it's now 10%. And that Black women are diagnosed with, are at higher risk for being diagnosed with triple negative breast cancer, which is a more aggressive form of breast cancer. So wanting to create something that I can give back to other people who may go through it.
So that's the focus of my work right now. So I just got funding to do a study focused on that. So I'm working on getting that up and going. So I'm excited about that. And then wanting to create a community similar to your podcast here to share information to women who are going through breast cancer diagnosis or any kind of cancer diagnosis as well. I created Anchored with Dr. K on Instagram as a way to share information about cancer prevention or treatment or different communities.
Kayoll: So finding different ways to give back in a way that is feasible, still with thinking about how much energy I have for certain things and being a bit, trying to be a bit more organized so that I can put my attention into what matters most.
Dr. Gyan's Final Advice: Finding Hope in the Midst of Struggle
Eunice: My final question is, any advice, whether medical, non-medical, things that may have seemed or maybe didn't seem as important then that you would give to our listeners? Just anything practical, maybe just anything small that you would want to share before we end?
Kayoll: In this life, everyone will go through suffering. It'll look different for different people, but surround yourself with things that give you hope and things that can build your faith, whatever that may be for you. Feed yourself in that so that you're able to have perspective while you're going through struggle to know that prayerfully this is just a short time and that this too will pass because you keep living long enough, it's going to pass. And so I would say that to just not lose hope, have faith, and surround yourself with what gives you joy and fills your spirit.
Eunice: Although this visit has ended, I hope this story stays with you and you can share it with someone who might need it. Until next time, take care.
