Every year Jean Marie and her step-mom Marilyn would attend the Wine Dinner at the Aurora Inn / Family Photo

Every year Jean Marie and her step-mom Marilyn would attend the Wine Dinner at the Aurora Inn / Family Photo

 Marilyn loved Skaneateles, NY and for Mother's day of 2015, the family gathered at the Sherwood Inn / Family Photo

Marilyn loved Skaneateles, NY and for Mother's day of 2015, the family gathered at the Sherwood Inn / Family Photo

 Marilyn's daughter Elle presenting her mom with the Chicago Marathon ribbon, which she completed in her honor October 2015 / Family Photo

Marilyn's daughter Elle presenting her mom with the Chicago Marathon ribbon, which she completed in her honor October 2015 / Family Photo

In Memory of Marilyn A. Westlake

Breast cancer has many forms which all fall under the same name. Some forms of breast cancer are kinder, gentler and other forms of the disease are not. Inflammatory Breast Cancer is one of the most rarer forms of the disease, but also one of the most life-threatening due to its quiet nature. This was the form of breast cancer Marilyn A. Westlake would be formally diagnosed with in 2014.

Inflammatory breast cancer accounts for 1 to 5 percent of all breast cancers diagnosed in the United States. Most inflammatory breast cancers are invasive ductal carcinomas, which means they developed from cells that line the milk ducts of the breast and then spread beyond the ducts. - The IBC Network Foundation

The story of Marilyn, as told by her step-daughter Jean Marie Spoto and husband Carmen Spoto on February 18, 2018 at a small coffee shop in North Syracuse, will remind you how important early detection is. Marilyn had no idea she had breast cancer, inflammatory breast cancer does not reveal itself during routine mammograms and does not present noticeable symptoms until the disease has progressed to a dangerous stage (stage 3 and 4 typically)

 Jean Marie and her husband Carmen / Family Photo.

Jean Marie and her husband Carmen / Family Photo.

It was the summer of 2014 and Jean Marie reflects back to how Marilyn and her father were acting differently, suggesting something was not quite right, though unsure of what it could be. Jean Marie and her husband have a summer camp on Cayuga Lake (Finger Lakes Region of New York) and that August Marilyn and her husband, Jean Marie's father, came down to the camp, sitting them down and delivering the news of her diagnosis. 

Having breast cancer was not new to Marilyn, she was diagnosed and survived a bout of the disease in 1999 (Stage 1 Breast Cancer). Jean Marie shares, "She kept with her regular mammogram appointments, every six months BECAUSE she was a breast cancer survivor. She was doing everything she was suppose to do, this snuck up on her, she just didn’t know."

Jean Marie continues, "She thought it was a rash and told me, "if I knew then what I know now, I would have reacted (responded) differently. I never knew this was out there. I was looking for a lump, no lump, I’m fine"." 

 Marilyn's son-in-law Carmen, grandson Stephen (13), step-daughter Jean Marie, and granddaughter Gabriella (15) / Family Photo.

Marilyn's son-in-law Carmen, grandson Stephen (13), step-daughter Jean Marie, and granddaughter Gabriella (15) / Family Photo.

 

Inflammatory breast cancer progresses rapidly, often in a matter of weeks or months. Inflammatory breast cancer is either stage III or IV at diagnosis, depending on whether cancer cells have spread only to nearby lymph nodes or to other tissues as well. It is not commonly picked up by a mammogram. - The IBC Network Foundation

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Listening to Jean Marie and her husband Carmen share memories of Marilyn you learn she was an extremely influential role in not only the family's lives, but everyone she came in contact with. As an only child, she embraced family with vigor. She also embraced life with great energy, working hard as an accomplished attorney and mediator and enjoying all that a life in New York had to offer, from the local wineries to tending gardens which inspired a passion for cooking. 

She was also well-traveled and highly educated. It was no surprise to her family she would make herself an expert of inflammatory breast cancer. "Marilyn was the type of person who took nothing sitting down, where there was a will there was a way, she researched all the cancer institutes throughout the United States, and probably into Europe where she spent a large part of her adult early married life, with her first husband."

 Marilyn and her husband Stephen loved to attend cooking classes / Family Photo

Marilyn and her husband Stephen loved to attend cooking classes / Family Photo

 Marilyn and her husband Stephen on a trip to Lake Placid right before she began her treatment of Inflammatory Breast Cancer / Family Photo

Marilyn and her husband Stephen on a trip to Lake Placid right before she began her treatment of Inflammatory Breast Cancer / Family Photo

Jean Marie shared what a successful career her step-mom had, one which inspired herself to find passion in law and followed her step-mom's footsteps, becoming an attorney herself. As a prominent member of her community professionally and personally, Marilyn knew the news of her having breast cancer would have a big impact on her clients. Therefore, it was Marilyn's wish to keep her illness private while she settled her affairs.

The average survival rate of those diagnosed with inflammatory breast cancer is 21 months. Marilyn was diagnosed with Stage 4 Triple Negative Inflammatory Breast Cancer, "worse possible scenario," she knew it was important to wrap-up her business quickly.

Having breast cancer did not hold Marilyn back and she fought to ensure she had the chance to live every day afforded by this disease. She would connect with Dana-Farber Cancer Institute (Boston), where they unfortunately could not do anything more for her, but she could support their research efforts for a cure. She would also become passionately active with The IBC Network Foundation and made awareness and education a top priority while she was alive. 

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"Marilyn was a phenomenal cook. When I say I can’t cook, I can’t cook. She was an amazing cook and her mother was an amazing cook. One of the things she wanted to do, was put together this cookbook. She kept this project between her and my dad, though I had a suspicion something was going on, she started showing up to the house with old recipes!

During one particular family gathering, Marilyn showed up with something special for her loved ones, stacks of cook books she made containing all their favorite recipes. She personalized each one and each came with it a special request:

"When my oncologist told me to go home and settle my affairs, I decided that this book was top on the "to do" list. Soup d' Week is my gift to my family and friends.
I have one request of all of you: spread the word about Inflammatory Breast Cancer. Make copies of the "Signs" page in this book and distribute them to every woman you encounter." - Marilyn
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While Jean Marie flips through the cook book during our time together, she points out the little stories tied to each recipe.  "The cook book is amazing. In the book itself she tells you who the recipes are from. There are little stories with each recipe. We are all in there, if you knew her, you were in there. It's a story of her life through food.

The Mac and Four Cheese Casserole is her 13 year old son's favorite, "He can make it by scratch without looking at the recipe. He’s 13! It's crunchy, gooey and chewy - she made it all the time!"  She and her husband continue to share stories of how Marilyn taught her children to cook, her love to try anything and everything. Cooking and sharing meals with family is a legacy they will all cherish. 

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RECIPE: Mac & 4 Cheese Casserole

  • 1 pkg. elbow macaroni
  • 4 pkgs. shredded cheese: sharp cheddar,  Monterey jack, Colby and Mozzarella 
  • butter
  • salt and pepper
  • milk

Preheat ovan to 400 degrees. Cook macaroni and drain well. Mix the cheeses together. Layer 9x13 inch casserole dish: macaroni, cheeses, dots of butter and salt and pepper. Repeat layers. Pour milk over - just enough so that when you tip the casserole dish, you can see the milk coming up on the sides. You can stop after layering the dish and refrigerate or freeze. Remember the milk when ready to bake. Bake for one hour

Marilyn did what she could to maintain as much normalcy as possible. Before she was diagnosed with inflammatory breast cancer she loved visiting wineries, wintering in Zephyrhills, Florida with her husband, attending cooking classes, taking her grandchildren to and from summer camp and teaching them how to live a more adventurous life. These activities and passions did not stop because she was diagnosed with breast cancer.

She would survive the to see her 70th birthday, where family and friends threw her a huge party (pictured right). She would also survive to see her favorite holiday of the year, though it would be her last - Saint Patrick's Day 2016. 

 In January 2016, Marilyn's family and friends threw her a party to celebrate her 70th birthday.

In January 2016, Marilyn's family and friends threw her a party to celebrate her 70th birthday.

 Her grandkids where her quintessential focus of her entire life and she wanted to be close to them / Family Photo

Her grandkids where her quintessential focus of her entire life and she wanted to be close to them / Family Photo

 Marilyn receiving a hug from her daughter Ella after she crossed the finish line of the Chicago Marathon, October 2015. "I am extremely fortunate to have such a powerful role model." - Elle Yeomans / Family Photo

Marilyn receiving a hug from her daughter Ella after she crossed the finish line of the Chicago Marathon, October 2015. "I am extremely fortunate to have such a powerful role model." - Elle Yeomans / Family Photo

 Marilyn loved to spend time with her husband, Stephen - visiting wineries, wintering in Zephyrhills, Florida, and attending cooking classes. An especially favorite experience was playing Mrs. Claus to his Santa, arriving in Locke on a fire truck. / Family Photo

Marilyn loved to spend time with her husband, Stephen - visiting wineries, wintering in Zephyrhills, Florida, and attending cooking classes. An especially favorite experience was playing Mrs. Claus to his Santa, arriving in Locke on a fire truck. / Family Photo

In my short time with Marilyn's step-daughter and son-in-law, her passion for living and educating others came thru clearly with every story shared. From ensuring her grandchildren knew how to swim to talking to every woman she could about the hidden signs and symptoms of this disease.

On this note, it's my request of those reading to share Marilyn's story with as many young women as possible and encourage them, regardless of age to make themselves aware of Inflammatory Breast Cancer. While it's extremely rare, compromising 1-5% of all breast cancers - early detection is vital to increasing rates of survival.