I hope my story can help, even just one person

By ELLYN SANTIAGO

A few short months after her breast cancer surgery in November 1998, Marie Joly got on a plane with her husband, family, and church friends and flew to Italy for a holiday. Her doctors had given their blessing.

Around four-and-one-half years later, it was just weeks after her second surgery that she and her husband of 25 years at the time, Mike, went on a cruise to Alaska. On that trip, she biked from the Canadian border to Skagway, Alaska.

Grandmother Marie, now 69, was a very active 43 when she got the call from her gynecologist in September 1998. The mammogram from the previous day worried him.

“He was very concerned about mammogram results and said that I needed to see the surgeon by the end of the week,” Marie begins the story of her breast cancer journey. “I said, ‘I don’t have a surgeon. Who would you send your wife to?”

Marie would meet her new doctor the next morning and learn that he was “concerned about what he saw,” and she would undergo a surgical biopsy. But first, she needed to tell her then high school age son Steven, now 42. Mike would need to drive them both early in the morning, one to school, the other to the surgery.

“Steven was in his room crying his heart out. ‘I just want my mom back. I don’t want my mom to be sick. I’m scared.’ So, we talked about it. I told him, ‘Mom is going to be OK. We’re going to do this. We’re going to be OK.”

Their daughter Kristin was off to college in the fall of 1998 and returned home before the November surgery. “It wasn’t until years later, I told her that at the time, I felt so worried about her because I had to tell her something scary and then send her back to school alone. She said, ‘Mom, you were so calm and so positive, I knew you were going to be OK.”

Once the procedure was completed, Marie said she was “wrapped like Madonna” and told, “Don’t worry. We’ll see you on Monday.”

Her surgeon told her the diagnosis was “good and bad.” She had the earliest stage of breast cancer, ductal carcinoma in situ (DCIS). “Early stage, but he said the cells were aggressive and highly recommended a mastectomy,” Marie recalled.

When meeting with the oncologist, she was overwhelmed by the jargon, all the new information to process, and a lot to learn and understand quickly.

“I went to the Backus Hospital library to do research and study. I was trying to understand what they were going to do to my body.”

She learned and weighed options. She decided to “use my body tissue, being my age and that I was active.”

“There’s a wall between you and the person talking to you. You don’t absorb all they’re saying. There’s so much to comprehend. It’s completely overwhelming. So, I started writing a journal and still journal to this day. I got other people to do the same thing. It helps.”

On November 1, 1998, Marie turned 44. On November 2, she went in for surgery.

“I won’t ever forget that birthday,” she said. “My body was changing forever.”

She’d spend the next two months recuperating. With her dining room converted to a bedroom, her family cared for her. “They helped me to heal. I made progress and kept working to get stronger. My sisters washed my hair in the sink. (Her family) hired someone to clean my house. People in the community delivered food every day.”

Then there was their “marching band family,” of which her family were longtime members.

“They were so supportive. When her son Steven had a band competition at Giants Stadium, we couldn't go. Mike stayed to take care of me. We’d gone to every competition before. Everybody in the band, especially percussion, was really good to him. All the kids signed a drum head for me. Everybody was there supporting my children and me.”

She also praised her medical team. “They were all excellent. I couldn’t have asked for more caring people, people who listened to me and took care of me,” she said.

Soon, Marie would transition from the dining room to her bedroom upstairs.

“They were going to church. Mike got me up the stairs and into bed. They left. I was in tears. And the kids told me Dad broke down in church. But he came home and he and Kristen gave me my first bath. I had never had anybody wash me. I’m very modest. We worked as a team,” she shared. A powerful and tender memory for her.

Life needs to go on

By the first of the year, 1999, as “reconstruction seemed to go well,” she was cleared to return to work. At the time, she was a high school librarian. It didn't go well.

“I got very sick,” she recalled. Hospitalized briefly with low white blood cell counts, she’d soon rally and return to her job. Then a surprise. Husband Mike signed them up for a church group trip to Italy. She spoke to her supervisor at work, and her healthcare team, and got the go-ahead.  She’d been prescribed Tamoxifen and was concerned about the hot flashes, so she briefly went off the med for the trip, but once home went right back on the drug.

“Going to Italy redirected my energy,” she noted.

Four-and-a-half years pass. Then a “not good” mammogram. “They didn't get everything,” she said. The recurrence meant two surgeries. She and Mike had an anniversary trip to Alaska aboard a cruise ship coming up. With a successful second surgery and positive post-op, her doctors gave their blessing for the voyage. “I kayaked with my husband -- with him doing the lion’s share of the paddling. We took a bike ride from the Canadian border to Skagway, Alaska. It was a wonderful experience. Life needs to go on.”

After Alaska, it was back home and radiation and Nolvadex. “I wasn’t menopausal, so they surgically removed my ovaries. Then, the post-menopausal drug did the trick, but I got lymphedema. I’ve lived with it for 20 years. I get my mammograms done every year.”

Life went on, until a car crash in 2019. She and her sister-in-law, who just finished cancer care, were on the way to breakfast when a driver ran a red light and hit them, totaling the car and sending them to the hospital. Her sister-in-law was OK to be discharged. But while hospitalized, Marie was told, “We need to talk to you.” Marie had a mass on her lung. “They sent me to appointments and tests. My oncologist called from Florida to say she was very concerned as she saw the results of my X-rays.”

“We had to figure out what was going on,” Marie said.  Radiation from a world-renowned radiologist. Aggressive, intensive radiation against the aggressiveness of cells. It was a challenging area on the chest wall. Marie had a choice:  Biopsy? Removal? Or, watch it.

“I decided to watch it. And we are still watching.” She has radiation side effects, but she lives with it.

“I’m here. I’m biking. I’m hiking. I’m snow skiing. I’m traveling the world. And, I’m  reaching out and supporting people on a cancer journey.”

Supporting others on their cancer journeys

Marie is almost a full-time volunteer. She gives her time to Eastern Connecticut Hematology and Oncology Associates, aka ECHO of Norwich, and the American Cancer Society. She mentors women diagnosed with breast cancer. She was a volunteer Girl Scout leader for years and volunteers with the Pequot Bike Club. Marie walked as a ‘Survivor in Fashion,’ at Foxwoods, helping to raise money for the Backus Hospital Foundation to provide women with breast cancer with “comfort care.”

And she has a connection to TBBCF as she’s walked the walk, so to speak, three times including riding a bike in support of walkers. She learned to prop up herself, along with other women going through their cancer journeys, in a support group of “really nice ladies going through a breast cancer diagnosis. One was a woman she’d worked with many years ago at Backus.

“She shared her vulnerability with the group. What that lady did for me that day because she shared her story, changed things for me. She felt vulnerable like I did but allowed herself to be emotional in front of other people. I was so afraid to be vulnerable in front of others. Going to the support group was the best thing, being with women who understood.”

The women’s group was also where she met the Pequot Bike Club’s president, who invited her to join.

“I told her, ‘I’ve seen them riding fast on Route 82 and I can’t do that.’ She said, ‘No, Marie. Come ride with me. I smell the roses.’” So, she joined and now can, “ride like the guys on Route 82.”

“There’s a lot of learning on this journey. God had a plan. I’ve met so many wonderful people. I appreciate life so much more. I did before, but this journey takes it to a different level. I really care about the people around me. That's why I volunteer.”

She and the Pink Ladies group. Together now for 20 years plus, they go out to dinner bi-monthly. At a recent dinner, a woman set to have a procedure enjoyed a hug “from every one of us.”

Marie said she lives her life with a positive attitude.

“Think of what your options are. You could wake in the morning, not brush your hair, not put makeup on, put on ragged clothes, or you could brush your hair, and dress nice. I put lipstick on every day. I’m fair and it makes me look alive. It gives me color; it makes me feel good. It wakes me up and keeps me going. I feel like this whole journey has given me a whole different perspective on life.”

This summer, she and Mike celebrate 47 years of marriage. Their daughter Kristin is marrying her longtime love. Guests at her shower were asked to donate to the cancer center for patient support, in honor of her mother, instead of gifts.

She’s living her life to the fullest. And she hopes that for other women.

“I hope my story can help, even just one person.”