Dec. 15, 2022: The day Winter Garden resident Caitlin Schlueter, 34, was diagnosed with metastatic HER2+ breast cancer.
It was one of the most terrifying moments of her life.
“It’s just been such a process where you feel like there’s no light at the end of the tunnel,” Schlueter said. “That time period thinking, ‘What if, what if, what if?’ Thoughts in my head like, ‘Should I be writing letters for my kids’ big events that I’m going to miss?’ Like, ‘Am I going to die?’”
Although frightening, Schlueter said she has never felt less alone on her journey.
“The love and the support and all of that has just been insane,” Schlueter said. “My friends and my family are all backing me up and trying to help me in any way that they can. I’m just so grateful. I couldn’t imagine how anybody could do this on their own.”
In September, Schlueter said she noticed a concerning mass in one of her breasts, slightly smaller than the size of a golf ball.
“Being a nurse, you know you push everything under the rug,” she said. “I thought it could be my period or an inflamed lymph node. I said, ‘It’s nothing, it’s nothing,’ and I put it off.”
Schlueter recently had her women’s wellness visit in August and was told she was healthy.
Her sister, Taylor Zevallos, called and made an appointment for Schlueter to be checked in November.
By December, Schlueter had received her cancer diagnosis.
HER2+ breast cancers are known to be more aggressive than other types of breast cancer.
Schlueter said knowing the cancer was metastatic was petrifying — she had no idea where else the cancer could be. She said her medical background — being a nurse for 10 years and working in the emergency room at AdventHealth Winter Garden for six — actually scared her more because of the endless possibilities and how deadly the cancer could be.
Schlueter had her port placed Dec. 27. One day later, she had her first echocardiogram, a process she had to have repeated every three months because of the chemotherapy weakening her heart. She also met with a surgeon to discuss options moving forward.
On Jan. 9, Schlueter started her first round of chemotherapy. She underwent a total of six rounds, once every three weeks. She is receiving antibody infusions for the rest of the year.
Schlueter said her husband, Jason, had a rough time finding out the news. It didn’t seem real at first until he saw the side effects from the chemo.
“When she was diagnosed, it was a huge blow and a gut-check,” he said. “After that, it was just a matter of adapting for me. We had to focus on Cait and getting Cait better. Whatever got her to the next step is what we needed to do.”
Schlueter said one of the biggest struggles in the beginning of the journey was figuring out how to tell her children — Liam, 7, and Olivia, 5.
“You never know how to deal with it,” she said. “Do you hide it from them or do you be completely open with them? We’ve decided to be just completely open, and we think that that’s the best decision … they’ve been great. There’s been no acting out or any difference.”
Schlueter said Liam has been really good about handling the news.
“The biggest thing was when we told him I had cancer, it was cry, cry, cry,” she said. “I told him I was still going to be the same mommy and that I was just going to look different with losing my hair. That was his biggest thing. He thought I wasn’t going to be the same mommy if I didn’t look like the same mommy.”
Once she started to lose her hair, Schlueter said she decided to shave it.
She hosted a group of friends who came over, and everyone shaved their heads. She said she let the children be a part of the process by taking scissors and letting them cut chunks of her hair.
“They felt like they had control over it,” she said. “Ever since then, they’ve been like, ‘What’s cancer?’ They don’t know that I’m any different. It’s unconditional love.”
Schlueter said although she is not someone who is vain or superficial, the change in her appearance was upsetting and a struggle for her.
“The hair loss, the eyebrow loss, the eyelashes, the steroids, the chemo, everything, just looking at myself, not being able to work out like I used to, just taking my daily routine away from me I think was the hardest thing for me,” she said. “I hated looking at myself in the mirror. I hated every moment of it. My friends and my family were very supportive and helped to talk me through it so I stopped being so hard on myself with the way I looked because I obviously had no choice about it.”
On April 25 Schlueter finished chemo. She met with her surgeon May 8 to review her post chemo MRI and schedule her double mastectomy, which she underwent June 9.
She said the surgery also was one of the scariest moments since her diagnosis because she had never gone through a surgery before.
“At first, I thought, ‘OK, boobs are boobs,’ but when it got closer, I felt like something was being taken from me, and I realized I was never going to get that part of me back,” she said. “It’s a weird feeling mentally.”
Schlueter is now completely cancer-free, and she never has to worry about breast cancer again.
Zevallos and Schlueter’s friend for 20 years, Shannon Hayghe, created a GoFundMe to help with medical costs.
Hayghe said Schlueter has been nothing less than inspiring.
“I remember when she told me that she was being evaluated for breast cancer; I just started crying,” Hayghe shared. “I started thinking about how devastating this news was for her as a 34-year-old, wife, mother and full-time registered nurse. As health care workers, we knew all the avenues this could go down. Even though you know that cancer is a possibility, you don’t expect for it to hit so close to home, especially to your childhood friend. Cait said to me, ‘Stop crying, I will get through this,’ and she has been. I admire her strength, determination, courage and resilience. She has had such a great attitude through this entire process and has not allowed cancer to change who she is. The amount of love and support she has received speaks volumes to the person she is.”
Because Schlueter received her diagnosis in December and her new health benefits came out in January, she was told her cancer was considered pre-existing.
Schlueter has been out of work and not received a paycheck for almost six months. The Schlueters also had to place the children in summer care so Caitlin Schlueter could receive the rest and time to heal that she needed, causing another financial strain.
Schlueter said the GoFundMe, which has raised more than $18,000, has really helped her and her family stay on their feet.
In addition, Zevallos and Hayghe have created a Facebook group with more than 300 members documenting Schlueter’s journey to help her stay positive during the tough times.
“She has always been very independent,” Zevallos said of Schlueter. “When she found out about her diagnosis, I know she was extremely scared at first and kept everything to herself. She was hesitant when people started reaching out and seeing what they could do to help because she never wanted to be a burden. I don’t think she realized how many lives she has touched before fighting this battle. There is no doubt in my mind that all the support she has received thus far has helped her tremendously along this journey. She was able to focus on herself and her treatments. She has had her ups, downs, and nerves during this fight but I’ve truly never seen someone as strong and mentally tough as her.”
Regarding the community’s outpouring of support, Schlueter said she did not realize she knew so many people. Even people she does not know personally have been following and supporting her on her journey.
“It really does put me at ease and keep me uplifted,” she said. “Even my family constantly telling me how strong and how brave they think I am — it’s made me realize that I really am stronger than I feel and braver than I think. It’s helped me get through day by day.”
The Schlueters’ friends and family have also put together a rotating meal train, created ‘Schlueter Strong’ T-shirts, and some have even tried to donate their time off.
DG Doughnuts in the city of Ocoee is hosting an event for the Schlueter family next month.
The Doughnuts and Bubbly event will take place Saturday, July 8, to celebrate the halfway mark of Schlueter’s journey. The event will include $20 for unlimited mimosas and a mini doughnut, as well as a silent auction and raffle. All proceeds will go to the Schlueters to help with medical expenses.
Schlueter said she feels a lot more positive now knowing she is halfway through. She will complete her journey around February.
Up next is five weeks of radiation before starting reconstructive surgery.
Schlueter said she wishes she could show people how much she appreciates their kindness because saying “thank you” doesn’t seem like enough.