PEORIA — Amie Slott felt a sense of relief the first time she walked into Komen Cafe, a monthly support group for women with breast cancer.
Just a few weeks into treatment for a very aggressive form of breast cancer, Slott, who was 38 at the time, didn’t know anyone else who had the disease.
“It’s always intimidating to walk into a place where you don’t know anyone, but I looked around and I saw other women who were puffy and swollen, who didn’t have hair, and I was like, ‘Good, we can all look cancer-y together,’” said Slott while sitting in the dining room of her West Peoria home.
Though Slott has now been done with treatment for almost three years, she still goes to the monthly meetings at Komen Cafe. The truth is, they are more important than ever.
“There’s this idea that when you are done with treatment you can put it behind you. And you might feel like that for three or four months, but then you realize you are never done with it,” she said. “You may wake up one morning and feel like something is off, and wonder ‘is the cancer back?’”
Slott knew something was wrong late in 2015 when her son, who was being combative about going to bed, kicked her breast. It hurt more than it should.
“Then I felt a little lump. So I called the midwife the next day and she ordered a mammogram,” said Slott.
The mammogram revealed the lump to be a swollen lymph node. The mammogram also revealed a number of suspicious spots. A biopsy confirmed the suspicion — cancer.
The day after Slott got the news she celebrated her son’s 4th birthday.
“We tried to forget about it for the weekend, but then on Sunday night we told the kids,” said Slott. Though 4-year-old Will didn’t really understand, Slott’s 7-year-old daughter Claire did.
“It was really, really important for us to be honest with them,” said Slott. “I wanted to make sure it wasn’t a secret because I knew that I needed them. I needed their hugs. I needed them so much more after the diagnosis.”
One day before treatment began Slott met with all her healthcare providers at the OSF Breast Center. Though it was probably the worst day of her life — Slott learned she had triple negative breast cancer — she describes it as "empowering." The day of planning helped prepare her for the journey ahead.
“I am an information sponge, and they gave me a lot of information,” said Slott. “It was a grueling, emotional, horrible day, but we came out with a plan. I felt like all my providers were on the same page.”
Triple negative breast cancer is fairly rare, found in only 10% to 20% of breast cancer patients. It lacks the three most common types of receptors known to fuel most breast cancer growth. Without those receptors, common treatments like hormone therapy and targeted drug treatments are ineffective. Research has shown, however, that chemotherapy can sometimes be very effective.
“It was really a 'throw everything at it' kind of situation,” said Slott. “My doctors made it clear that the tumors either respond well to chemotherapy or they laugh at it.”
Slott’s treatment began with a form of chemotherapy so aggressive it’s nicknamed red devil. She fought horrible nausea after the very first treatment, then she fought her insurance company to cover the IV anti-nausea meds when the pills didn’t work. Slott shaved her head before her hair had a chance to fall out, a step which felt empowering until cancer got the last laugh.
“What you don’t realize is all those teeny tiny little hairs are going to fall out, too,” she said. “After my second treatment, they all fell out while I was in the bathtub, leaving a black film on top of the water. It was like, ‘Ha, fooled you.’”
It was a bad moment. Slott found herself sitting on the bathroom floor crying.
Slott got six rounds of the red devil over 12 weeks, followed by a second round of a different type of chemotherapy. She got chemotherapy before surgery because her doctors wanted to see if it would shrink her tumor. It did. After chemo was complete, an ultrasound showed the tumor was shrinking.
Slott had a much needed break after finishing chemotherapy in mid-April. Then, on May 25, she had a bi-lateral mastectomy.
“The two or three days leading up to surgery were terrifying,” said Slott. “I sat and wrote goodbye letters to my two kids. And my husband had a really hard time the day of my surgery.”
Because Slott chose to have re-construction immediately following the mastectomy, she was in the operating room for 10 hours.
After surgery came more good news.
“When I finally exhaled was when I went to see my oncologist after surgery,” she said. “She said, 'We got all the stuff we knew was there, and since your tumor responded to chemo, we know it got rid of all the cancer we didn’t get with surgery.’”
Recovering from surgery took about eight weeks, though she was able to use her arms after about four.
“For anyone who has to go through that I tell them to rent a lift chair. You don’t realize how much you use your arms. We had the chair for a month, and I lived in it. I made a little nest in the corner,” she said.
Slott is thankful to her aunt, who came from Ohio shortly after the diagnosis and stayed until treatment was over.
Radiation was the last step. Though it was perhaps the least physically challenging part of the process, it came at the end of many difficult months.
“I was in treatment for nine months, and each stage was easier physically, but more difficult mentally,” Slott said. “It was just one more thing, then one more thing, then one more thing. It becomes more mentally challenging than physically.”
Through the entire process Slott found camaraderie and strength at the Komen Cafe. She met people who understand both the physical and emotional aspects of every step of the journey, from diagnosis, through treatment, and into the uncertain world of being declared cancer-free.
“We meet at the Komen affiliate in the Metro Centre. There is always coffee and snacks, and sometimes there’s a speaker. But what is great is being able to share stories and provide support,” said Slott. “I have met and become friends with people whose paths I would never have crossed. That’s the blessing of being a survivor, having good friends who get it. My husband is a great support, but he’s never been in my shoes — these women get it.”
Through her conversations with others, Slott has learned what true strength is.
“People say, ‘You are so strong, you are so brave,’ but you don’t feel brave when you go through it,” she said. “Sometimes brave is sitting on the bathroom floor and crying.”
Slott decided to tell her story as part of this year's More Than Pink Walk because sharing has been such an important part of her journey. Perhaps someone going through the same battle will read it and realize she doesn’t have to do this alone.
“I think it’s important for people to know there are people around them they can go to for support,” she said. “I know breast cancer can be a very private and personal journey for some people, but for me, part of my healing is being able to help other women with it.”
Leslie Renken can be reached at 686-3250 or email@example.com. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.