Holly Louis was diagnosed with breast cancer at the young age of 26, then was later dealt a devastating blow when diagnosed with ovarian cancer at age 32 during the COVID-19 lock down. She recounts the ups and downs of her journey, including the importance of community, of information and resource sharing, and how it has brought purpose and motivation back into her life.

Our Baddie x 2 series is an intimate moment in time grasping the interaction between two baddies as they discuss being diagnosed, survivorship, and everything that comes in between. We hope that you enjoy this series and that it sparks a dialogue amongst the breast cancer community.

Interview with breast and ovarian cancer survivor, Holly Louis, as told to Baddie Ambassador, Keneene Lewis

In this community, you meet so many people from all walks of life. While we unfortunately share the commonality of being diagnosed with breast cancer, you never know just how cool someone will be. I met my good Sis, Holly, while attending The Breasties Move Mountains Gala in New York in September 2022. CEO & Cofounder, Marissa Thomas and I flew in to show support for The Breasties with their gala and app release meetup. Here at the app release meetup in Brooklyn is where I met this amazing woman.

I think our first interaction was jumping into a picture together. After we flicked it up, introductions were made and we chatted a little bit. The next time I connected with her was at the Pynk Breast Cancer Outreach Young Survivor Panel hosted by For the Breast of Us (FTBOU) and Texas Southern University (TSU). This awesome event occurred on a Historically Black University campus during FTBOU’s Inaugural We Run This Sneaker Gala, in Houston, TX.

Imagine the sight of many breast cancer previvors, survivors, thrivers, and caregivers interacting with young men and women on this HBCU campus. We were all sharing our stories and learning how they were impacted by breast cancer affecting someone they loved. It didn’t matter which organization we were associated with at that moment, our primary focus was making sure we let them know that this disease does not discriminate.

Holly was right there in the mix with the rest of the Baddie Ambassadors (BAs). To see that many women of color (WOC) in that space and on a mission to inform and educate was an amazing sight to see! The next day, we interacted at FTBOU’s Inaugural We Run This Sneaker Gala. This gala honored the legends in the community while uplifting those who are still on their journey. I knew that I wanted to get to know Holly more and hoped that we could connect again. It is awesome how things aligned and allowed us to be in the same shared space again.

This time, we were in Charlotte, NC at the Young Survival Coalition Summit. After a day of conference sessions and exhibit hall, a few of us went to eat at a nearby restaurant. Dinner became our own impromptu session about our breast cancer journeys and all of the bells and whistles that come along the way: surgery, side effects, sex and intimacy changes, etc.

During that weekend, I casually mentioned that I may start a series soon and that I would like to reach out to her if she was open. Thankfully, she obliged. In the eleventh installment of our amazing series, Baddie x 2: Growth through Conversations, I was able to catch up with this amazing Baddie, Holly Louis.

Q&A Holly Louis

Hey Sis! Thank you for your time and the willingness to share your experience. How did you
hear about For The Breast Of Us (FTBOU)?

When I was diagnosed, there were no groups. I went to Dana Farber but they did not have a support group for younger women so I dealt with it internally. They were for everyone, but no one looked like me (older, white, etc.). I wanted people who resembled me. So I continued my search and came across a flyer that featured FTBOU Founders, Marissa Thomas and Jasmine Souers and I started following them on Instagram (as well as a couple of other groups). I was thankful for the connection when I found it.

How has FTBOU supported you? What is your favorite memory with FTBOU?

They were both very encouraging. When they would post something it was like they knew me. Zoom was my first introduction during the pandemic. I was watching a live [stream] and they were both so relatable. I then sent a friend request individually to connect with them even more. I wanted to get to know the women that I met on that Zoom. We connected and it was genuine. I could feel a vibe and aura coming from both of them…it was a good space and I wanted to be there. When I get a positive feeling, I go towards it. Whether venting or going through all of the things associated with cancer, if it is a positive vibe, I am there.

What year were you initially diagnosed?

April, 2013

What age were you when you were diagnosed?

26 years old

What was your initial diagnosis?

Stage 2A invasive ductal carcinoma (IDC), triple negative breast cancer (TNBC), BRCA 1 positive gene. This means that you have a much higher risk of developing breast or ovarian cancer compared with someone who does not have the mutation. They did not do genetic testing until two months later and right before radiation. They put a STAT order on it, or the abbreviation of the medical jargon, statim, meaning immediately and it did not come back until eight to nine weeks later, so it delayed my radiation.

This was a very hard time for me. They changed their vendor, so I had to go to get new labs. With the higher risks, I had more options so I chose to do a double mastectomy with no radiation. I delayed reconstruction because the technology was not as advanced as it is now. I had five surgeries and was not able to keep my nipples. There was not a huge push for reconstruction. Because I work at the hospital, I learned more medically.

However, I had a double duty because when I finished I did not have a support group, but because younger aged people were getting diagnosed more, they started a mentorship program. I wanted to be that someone that I needed when I was diagnosed for others because I had a better understanding of the trajectory that they may endure. There were so many women–like 30–but it had to be capped at five. I am thankful for mentorship program because it gave me a purpose. I was starting to go back to the old Holly–hair came back, wearing heels, energy, etc.

How did you feel when you were initially diagnosed?

I did not announce it, only to my partner at the time and my family. I kept everything confidential. I was working at the hospital and I wanted to be seen as Holly. I was around sick people and did not want to feel like a sick person.

Did you have recurrence or another diagnosis in a different part of your body?

I was diagnosed with ovarian cancer in December, 2019. It was not in the traditional way. I had been feeling really bloated and I had to use the restroom frequently. I had two pelvic exams and frequent labs. They saw something on my labs and scans and thought it would be an easy cyst removal. It was supposed to be a common outpatient surgery and they described it as an easy process saying that I would be home the same day.

When I woke up, it was all bad news. They went in to do the hysterectomy and they found ovarian cancer at 32 years old. It was so traumatic and hurtful hearing that I would not be able to have kids. Again, I was the only young one…cancer and no kids.

COVID was just starting so no one could come with me. This was very difficult for me on multiple levels. I went into a depression. I couldn’t see anyone during this time. I only went outside for treatment. I had extreme neuropathy, so I sat in a recliner for months. My relationship deteriorated due to the mental components associated with cancer.

My treatment for ovarian cancer ended in April, 2020.

What is your current treatment plan?

I do not have to take any stability meds on a daily basis. I was doing physical therapy two times a week for the first year–going through chemotherapy again was taking a toll. Now, I get labs quarterly to monitor for both breast and ovarian cancer.

What is one thing that you wished you were told before treatment?

Lymphedema. I wish that they would have gone into detail about what it is, what could happen, and what you can do. It took them longer to diagnosis and I have it in both of my arms. Also, prepare you and highlight that it is a roller coaster. When you are first diagnosed, there is so much to do: appointments, tests, labs, etc., and when you are finished, you are not as busy. Your mind is able to think all the thoughts.

At my cancer center, you do not have access to a therapist during survivorship. My therapist had to get it signed off in order to stick with me for six weeks. She knew I was not in a place where she could let me go. Most times we are not prepared for all that comes with survivorship.

I truly believe in sisterhood. There are days when I got a phone call that meant so much more. Being around people who do not question anything is everything.

What was a positive thing that happened during this time that meant a lot to you?

I work in human resources (HR) and won an award for service with 200 votes. It is when they highlight and honor someone. People know that I am there for them. I am here for you–I work for you and I feel better when I am doing good work.

What is one fun activity that you did for yourself during treatment?

My colleagues would come to my treatment sessions. It was a gathering with music, snacks, and I was surrounded by love and treated with dignity and respect. I did not do anything fun during ovarian cancer because everything was in lock down during that diagnosis.

What was your biggest self-discovery or revelation after you were diagnosed?

How strong I am…I did not see how strong I was before. It can be seen as a pro and a con, but knowing that I can go through something and come out better–mentally, physically, emotionally, etc. Looking back, I did that!

What was the most difficult part of your journey and how did you overcome it?

What society deems as “womanly” was stripped from me without my consent. I did not have a say, or a choice and I will forever be traumatized by going through that experience. Also, losing my relationship with my life partner after being diagnosed. We were together for six to seven months during my breast cancer diagnosis. Then when we bought a house, I was diagnosed with ovarian cancer and it just dwindled.

We were together for only 6 months during my first diagnosis with breast cancer but made it through thankfully and it strengthened our relationship although difficult. A few years later, we purchased a home together and unfortunately a year into homeownership, I was diagnosed with ovarian cancer. We had been together for about 10 years and ultimately going through yet another cancer diagnosis and all the trials and tribulations that go along with it on top of it being in the thick of the COVID pandemic, our relationship started to decline until it ultimately broke us. Leaving that relationship and family we had created was one of the hardest decisions I ever had to make but I found myself again and I will forever be grateful for the journey and memories created. 

I understand my worth now. I was very timid and making excuses in my head. Finally, I realized who Holly was and my worth, which gave me the courage to leave that relationship.

What advice would you give on how to best support a loved one going through breast cancer?

It is always important to show up and make sure they know that you are there. Just knowing that if they need you, that you will show up. That is key for me. The follow-through is a must.

Did you lose your hair? How did you manage this?

The first time it was very hard. I did not know what to expect at a predominantly white hospital. The wig that they gave me was for a white woman. I was working through treatment, so I wore the wig. I was still fly! My ex shaved my head and I was even Amber Rose for Halloween. I embraced it and I was rocking it. My hair came back, not as full, but decent.

The second time it physically hurt during treatment. I did not know why, and no one could explain it. Then it fell off on New Year’s Eve. I woke up on New Year’s Day alone with no hair. There were bald spots and no edges. I was struggling. The doctor’s office needed to make sure that the ICD codes are written correctly so that you can use your insurance to get adequate wigs for women of color. It is an annual benefit as long as you are affected by it, but no one on my team told me about this. I was helping another woman and that is how I learned about it.

What physical changes happened after being diagnosed with breast cancer?

Neuropathy, lymphedema, bloated, constant need to go to the bathroom and insomnia

Do you believe that being diagnosed with breast cancer had a positive or negative change in your life? Why?

There are pros and cons. Going through chemo, 17 surgeries, and navigating it is a con. The people that I meet and things that I get to do are pros, despite the cons.

Survivorship/Thrivorship, what does that mean to you?

I consider myself a surviving-thriver. I am still going through everything. Yes, I have survived things, but I am thriving through other things. I do not like labels.

What advice would you give to someone trying to navigate survivorship?

How do you deal with insensitive comments?

For the most part, I take it in stride because I know that it has nothing to do with me. Now that I am older, I still take it in stride and even encourage them to educate themselves. When I was diagnosed the first time, I took it in. I did not know how to deflect or deal with it. I took it as truth…I took it as the Bible.

Have you truly accepted your new normal?

I would say that I am ACCEPTING. I am taking it day by day.

Has your anxiety increased or decreased since being diagnosed?

Increased. I never thought that I would be diagnosed young twice (26 & 32). I thought that I was in the clear. My anxiety was high–with scans, blood work, going to the hospital. When I was in therapy, I was getting great help tools. I found things on my own which I would then write down so I could remember when the anxiety increased again.

What do you have to repeatedly give yourself grace for since your diagnoses?

I have to remind myself that I am not the Holly that I was before. She is gone. I have to give myself grace with that. My weight, the thinness of my hair, neuropathy, the thoughts that come and go–I try to give myself grace. I get frustrated when I do not remember something; chemobrain is real. I give myself grace. I tell myself my motto: You did the best that you could, and you did OK. We as WOC must survive/thrive on many different levels, sometimes to the point where we cannot slip up.

How tired are you from just thriving?

I would say that I am often tired. It is in my nature to help whether I have the flexibility to or not and that can be exhausting. Regardless, I always find a way to push through. Knowing what we have gone through can be exhausting. Not knowing what could come due to the gene mutation is exhausting at times. It is not every day, but it can be an exhausting thought process. Also, not sleeping due to insomnia is exhausting.

What would you like the breast cancer community to do for more WOC?

More research, data, fact giving, keeping cancer centers up to date on what we need, and being held accountable. Do not take it personal when I bring it up, it is different for WOC.

What do you do that you feel assists you physically overall?

I am active in the gym–Zumba. I did the Livestrong program last year, it is a 12-week program through the YMCA for cancer survivors. They train your body back up and you get training and free membership for a year. They help you get back the strength you need. They understand cancer bodies and give you grace. It helped me get back to the strength that I had. Even walking was hard.

For more information about the Livestrong program visit: https://www.livestrong.org/what-we-do/program/livestrong-at-the-ymca

Mentally, what do you do on those hard days to push through?

Knowing the people that I have helped and how far they have come is a motivator. Like look at what you have done, Holly!

What complementary therapies have you tried?

Yoga. They have one on Sunday mornings at 8:30 AM. When I do go, I appreciate it. It “zens” me. At home, I do meditation. Sometimes I use the app, other times it is just me.

Have you made lifestyle changes that seem to work for you?

I limit red meat and force myself to be more active. I make it a priority. Also, engaging in things that are of interest, even if I have to do it by myself.

Tell me about your support system.

A lot of it was my ex’s family. They were supportive and helpful. My mom–I have toddler twin sisters–so she is tired. My sister, she was diagnosed two years ago. She is a mom of three children, works full time, and is a nursing student. These organizations that have groups and events, those are good for me. My people are the people that I have met, so I will give them a call, etc.

What effect did your diagnoses have on your marriage/dating?

I have not been in a relationship since my last one ten and a half years ago, so I do not know because I do not date, but I am ready.

How has your diagnosis affected your family?

I was really private and kept it low key. Then during my second diagnosis, my mom was my everything. She came with me to every appointment, stayed with me, took time off from work. She felt like she had no choice; she needed to be there for her child while not neglecting her other kids. There was also my sister and her children, they were always available and supportive.

What parts of old YOU are still a part of YOU today?

Foodie, I was before and still am. Compassion and empathy. It grew deeper.

What are your favorite parts about the new YOU that old YOU didn’t have?

I speak up, before I did not. I feel empowered in seeing how folks showcase what they have gone through despite the toll that it takes. I still do XYZ or at least I will try, and I step out of my comfort zone to help others.

How do you advocate?

I am in the back and not in the spotlight. What I say, share, and learn about others is not put under a spotlight, but I do share resources whether I think they are aware or not. Events–I share these with everyone. I love to help people, especially when it is something that I did not have.

What is your why?

Why not? Literally, why not? Some are lacking certain things like accessibility, resources, or social media, so I want to make sure I can share all of the information I can with the people that I meet.

What are three things you would tell someone who was just told that they have breast cancer?

You are not alone. That even with this diagnosis, you can still be. You will still be. You can continue in whatever way that means to you. It is not a period at the end the sentence, it is a comma. There is always light at the end of the tunnel.

What is a typical day like for you now?

I work full time on site two times a week, other days I work from home. There have been very long hard days assisting people and finding resources, but it keeps me motivated. I am also very active in my little sisters’ lives; I feel like a part time parent. And I am active in matters of BIPOC, inclusivity, and diversity. I am focusing on raising awareness.

Why do you feel it is important for us to reach out to your culture?

I did not know how common cancer was and how increasingly more common it has become. Having that knowledge and sharing it with folks that are young in age is important. It is important to teach them about advocating for themselves. For instance, I am mixed (Dominican & Haitian) and these cultures keep things very hush. But with knowledge, so many groups can share information before, during, and after cancer.

What FTBOU and The Breasties are doing is more than needed. Cancer does not discriminate. The Houston FTBOU event at TSU was so valuable by being able to meet the students exactly where they are. It had an impact on those students and will have residual effects in their lives and whomever they encounter going forward.

If you were to write a blog about yourself tomorrow, what would the title be?

And still.

What was your theme song during your treatment?

“Who Run The World” by Beyonce

What is something that you want to tell the lawmakers/change makers?

Stop making the decisions without involving those affected by breast cancer. Practice inclusivity with the people who have gone through, are going through, and will go through it. Separate it from the research and data.

What is your favorite memory of your journey has been?

Last year, I went to so many events that it brought me a different community mindset. I went to the FTBOU Sneaker Gala, the FTBOU x TSU event, the Breasties Gala; being in the same room with others who understand all that comes with breast cancer…priceless.

What is your dream trip/destination?

A relaxing and fun trip. Not feeling pressured to do anything…just eat and sleep well. Go to the pool. Get a drink. Go on an excursion if I want to. A trip where I do not worry about racism being involved and where there is a warm climate.

What is one thing that you would want the world to know about you that doesn’t have anything to do with breast cancer?

I have this obsession with flowers. I get myself flowers every two weeks. It depends on what speaks to me when I grab them. You gotta give the best to yourself if you want others to do it. I like treating myself well.

What question would you ask someone you were conducting the interview?

How can we best support you? My response: Anything that is missing or a void.

How can our readers connect with you?

IG: @holly_tl
EM: htlouis@gmail.com

If you see me at an event, say hello and introduce yourself.