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Breast Cancer Awareness Month

Indulging in a delicious, fresh specialty doughnut can be done guilt free in Port Jefferson this month.

East Main & Main, a doughnut shop in Port Jefferson Village that opened in June and is named for the intersection it overlooks, has embraced the spirit of national Breast Cancer Awareness Month. In October, among the shop’s made fresh in-house daily selections has been an assortment of pink-decorated themed treats meant to honor the occasion and raise money for a worthy cause.

Port Jeff annually recognizes breast cancer awareness thanks to the Fortunato Breast Health Center Services at John T. Mather Memorial Hospital, the driving force behind Paint Port Pink, a month-long community outreach effort in the village with the mission of raising awareness about breast cancer, sharing information and education and fostering solidarity in the community. Every day this month, East Main & Main owners Lisa Harris and Robert Strehle have brainstormed new pink doughnuts to offer to customers, and a portion of the sales for each of the commemorative pastries will be donated to the Fortunato center’s Fund for the Uninsured at the end of the month. The fund is comprised of money from community donations and fundraising initiatives to offer discounted or no-cost mammography screenings to qualified patients.

“Cancer in general is a cause that’s near and dear to my heart and this was something we were definitely going to jump on board with and participate in,” Harris said during a phone interview. She said she has an aunt who is a breast cancer survivor and knows many others, so the decision to participate was easy. “We just look forward to getting more and more involved in the community in any way that we can, especially for causes we believe in.”

Harris said the pink doughnuts have sold out every day so far and the customer response has been enthusiastic. Some of the flavors have included pink guava, peanut butter and jelly, pink lemonade, a “pink diva” doughnut with gold glitter and many more. None of the flavors have been or will be repeated, and Harris said it has been a little stressful coming up with new flavors, which she said they do on the fly each day, but a dedicated team of kid tasters and other customers have offered feedback and suggestions to share the creative burden.

“It’s all sorts of fun,” Harris said of the creative process.

On Oct. 4, the shop featured a strawberry pomegranate frosted doughnut, and a satisfied customer commented on a photo of the creation on East Main & Main’s Instagram account: “Yumm! The best flavor! Can’t wait for it to reappear in the spring — hopefully?”

Also featured the same day was the Pink Party, a strawberry frosted doughnut dipped in rainbow sprinkles.

“Hands down the best pink-frosted donut I’ve ever had,” another Instagram follower posted. “Thank you for that magic.”

Harris suggested the success of the October promotion has inspired the owners to seek out more month-long features aimed at raising money and awareness for worthy causes in the coming months.

The American Cancer Society reports that the chance of a woman having invasive breast cancer sometime during her life is about one in eight. Since there is still no sure way to prevent breast cancer, increased awareness, education and early detection are critical components of breast health care. The Fortunato center recommends that women apply the following the guidelines for early detection of breast cancer: first mammography by age 40 and yearly mammograms after age 40; clinical breast exams at least every three years beginning at age 20 and annually after age 40; and monthly breast self-examinations.

Barbara Vivolo stands in her new wig salon. Photo by Sara-Megan Walsh

By Sara-Megan Walsh

A Hauppauge breast cancer survivor is hoping to turn her experience into a new business to help others feel good about themselves.

Barbara Vivolo opened Barbara’s Hair Studio in September, a custom wig salon with the aim to help women diagnosed with cancer and other illnesses resulting in hair loss. The shop, opening days before October, which marks Breast Cancer Awareness Month, is fortuitous for Vivolo — who prefers to call herself a “thriver” rather than a survivor.

“I asked myself how can I make them go from survivors to thrivers?” Vivolo said. “To become thrivers we have to move forward together.”

Barbara Vivolo wears a pink wig at a breast cancer charity kickoff event. Photo from Facebook

Vivolo is a trained cosmetologist with more than 30 years experience, whose life dramatically changed when her mother and aunt were both diagnosed with breast cancer within the same week.

“My aunt was a hairdresser too, and she was always my inspiration to become a hairdresser when I was young,” Vivolo said. “We worked together for years.”

Her aunt, Phyllis Borek, lost her hair while undergoing chemotherapy treatments, which led Vivolo to her first time visiting a wig salon on the hunt for the perfect do.

“My aunt was funny with her wigs and we had a good time,” she said. “She was all, ‘Oh, now I can be the perfect redhead or I can be the perfect blond.’ One week it was short, then long. She really rocked it.”

Vivolo also started picking out wigs to ship to her mother in Florida, who continued working through her cancer treatments, often first painstakingly custom cutting and coloring the wigs.

Vivolo was shocked upon being diagnosed with ER-positive ductal carcinoma, breast cancer whose growth is affected by the hormone estrogen, at age 40. With three young children, she made the difficult choice to undergo a double mastectomy with reconstructive surgery.

While undergoing her procedures, the hairdresser said she found it difficult to relax and heal without planning for the future and began writing in a composition notebook simply labeled “wig salon.”

“My husband would watch me write in this book every day, thinking about opening up a wig salon,” Vivolo said.

One composition notebook full of dreams and business ideas was quickly filled, then another, as Vivolo was more focused on raising her family.

“I prayed to my mother and my aunt that if I was going to open this salon, a wig salon to help women with cancer, I needed to win this money. When I found out I did, I sat there and cried.”

— Barbara Vivolo

In March 2016, Vivolo made the decision she would move forward. She wanted to offer cancer patients and women affected by hair loss a personal one-on-one experience where they could feel safe and supported during the process of selecting their first wig.

“It’s a awful lot to swallow,” she said.

Vivolo said she experienced “divine intervention” when attending a breast cancer event last October.

“I prayed to my mother and my aunt that if I was going to open this salon, a wig salon to help women with cancer, I needed to win this money,” she said. “When I found out I did, I sat there and cried.”

The hairdresser had won approximately $1,000 in a 50/50 raffle, which she then used to pay for her first shipment of wigs.

Now, she’s got a private one-chair hair studio where clients, one at a time, can come in and go through the process of being shaved, selecting their wig and have it custom colored and cut. The wigs range in price from $200 to more than $1,000, synthetic to made with human hair. While going through the process, Vivolo said she often answers questions about her personal experience and offers support as a certified health and life coach.

“They can see my end results, while they are in the beginning phases [of treatment],” Vivolo said. “I say to them, ‘Let me hold your hand and walk through this with you.’”

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St. Charles Hospital nurses and other staff wear pink bracelets as a sign of support for Desiree Bielski-Stoff, who is battling breast cancer. Photo from Bielski-Stoff

By Rebecca Anzel

Registered nurse at St. Charles Hospital in Port Jefferson Desiree Bielski-Stoff knows what a lump feels like — she had a small one removed from her left breast when she was 20. Since then, she performed self-examinations regularly and, coupled with her medical knowledge, thought she was “pretty good” at self-assessment.

In September, Bielski-Stoff, who is now 37, was diagnosed with breast cancer. Less than a month later, she had a double mastectomy at Memorial Sloan Kettering Cancer Center in Manhattan.

Bielski-Stoff waits to enter the operating room before her double mastectomy Oct. 4. Photo from Bielski-Stoff
Bielski-Stoff waits to enter the operating room before her double mastectomy Oct. 4. Photo from Bielski-Stoff

“I was looking for something like that mass in my left breast, something I could feel,” she said. “It wasn’t like a lighted sign going ‘Bling Bling, you have cancer — you have a mass in your breast,’ and I think that’s what we think we’re supposed to be looking for.”

October is national Breast Cancer Awareness Month, and Bielski-Stoff has been sharing her story with friends and family in the hopes they will not have to go through what she experienced. Every two minutes, a woman in the U.S. is diagnosed with breast cancer, a disease that kills more than 40,000 women each year, according to Right at Home, a senior care organization.

On average, women develop breast cancer at age 61. Bielski-Stoff’s diagnosis rattled her family, friends and coworkers. She has worked at the hospital since 2004.

“It’s eye-opening for all of us — I’m her age, you know? You never know,” Kim Audiino, an emergency room nurse at St. Charles Hospital and friend of Bielski-Stoff, said. “I think people need to open their eyes and be more alert about checking themselves.”

Bielski-Stoff was getting dressed after taking a shower in August when out of the corner of her eye, she noticed her right breast collapsed when she lifted her arm. Her first thought, she said, was that it was due to the 10 pounds she recently lost for her sister’s upcoming wedding. Bielski-Stoff conducted a brief self-exam, finding nothing out of the ordinary — nothing was swollen and she did not feel any lumps.

She showed her gynecologist that Wednesday. Bielski-Stoff said the doctor cocked her head, commented that it looked like a dimple and gave her a script for a mammogram and an ultrasound. The doctor told her it was probably nothing but she wanted to be on the safe side.

Her appointment was Sept. 7 at St. Charles with Dr. Jane Marie Testa, a doctor her coworkers recommended after Bielski-Stoff insisted she wanted to see the best. George, her husband, had asked if she wanted him to go with her, but she said no — she did not want to make it a big deal.

“I remember driving there and pulling up in the parking lot and thinking, either this is going to go in a good way or it’s not,” Bielski-Stoff said, “like, this could be the last time I feel normal.”

The tests took a few hours. When they were over, Testa came in and said she wanted to show Bielski-Stoff a few things with the ultrasound. There was a spot on her left breast the doctor wanted to take a sample of, and one on her right. Then Testa hovered over another spot on her right breast and said she was sorry — it was cancer.

There was no question about what it was, Bielski-Stoff said. It was a classic presentation of a cancerous mass. It was irregularly shaped and had vascularity and calcifications. Questions were flying through her mind about whether her life was over, if she would be in pain and if she was going to be okay, she said.

“The feeling that comes over you when somebody says cancer is just, I started crying,” Bielski-Stoff said. “I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”

Her sister’s wedding was that weekend, so she booked the biopsies for the following Wednesday. Then she set about trying to find a surgeon.

Bielski-Stoff’s insurance company told her there was only one in network near her, so she turned to her coworkers at St. Charles for advice. With the help of her supervisor and the head of human resources, Bielski-Stoff learned the doctors at Memorial Sloan Kettering were covered.

The surgeon gave her two options: either Bielski-Stoff could get a lumpectomy with radiation or she could get a mastectomy. She opted for a double mastectomy.

“I have to live with this. This is what I can live with,” she said about her decision. “I’m young, 37. I can’t spend the rest of my life panicking that I’m getting cancer again.”

“The feeling that comes over you when somebody says cancer is just, I started crying. I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”

— Desiree Bielski-Stoff

Her surgery was Oct. 3. Two weeks later, all the drains were out and she was sore but doing well. The support from her friends at St. Charles helped her through the experience, she said. They visited her every day, bringing her flowers and food, watching movies with her, checking her dressings, helping her bathe and delivering her medicine from the pharmacy.

“We were pretty much her nanny 24/7 while her husband was working,” Audiino said. “She was never alone, and she had more care than anyone I’ve seen because she’s so well-known and well-liked. We love her to pieces.”

Audiino and another friend, Colleen Miller, raised just about $600 selling over 150 pink bracelets around the hospital. Her Facebook page is littered with pictures of coworkers wearing their bracelets — some say Faith, others say Hope and Survivor. The funds paid for the hotel room Bielski-Stoff’s husband stayed in the night before her surgery.

St. Charles is letting employees donate their vacation time to Bielski-Stoff. She has exhausted hers between her cancer experience and working on the hospital’s negotiating team.

“All of us at St. Charles wish Desiree the best of health — I am very proud of our staff for supporting Desiree during this difficult time,” Jim O’Connor, executive vice president and chief administrative officer at St. Charles, said in an email. “Their gesture also brings awareness to this important health issue and the need for screening and early detection.”

Others have been doing what they can to show their support as well. A former patient’s family drove to her house from the North Shore to drop off supermarket gift cards, and her sister set up a GoFundMe account.

Bielski-Stoff said this experience has been traumatic because it feels like she does not just have cancer, but all her friends and family do. Her diagnosis has made the people around her aware of the importance of conducting self-examinations and going to a doctor regularly.

“It made me have a different look on life and it definitely opened my eyes to making sure that I take care of myself and my children, and that all of my friends keep up with checking for themselves,” Miller, a nursing assistant at St. Charles, said. “In the meantime, we all have to be ‘Dezzy strong,’ as I call it, and be there for her while she’s recovering.”

Bielski-Stoff found out on Halloween she’ll need four months of chemotherapy. 

“That’s going to change me as well and make the fight a little bit harder,” she said.

Bielski-Stoff’s friend Jimmy Bonacasa is hosting a fundraiser for her at the Harbor Crab in Patchogue Sunday, Nov. 13, from 4 to 8 p.m. There is a suggested donation of $20.

This version was updated Nov. 1 to include Bielski-Stoff’s treatment plan.

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