"Live life to the fullest"

 
 
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Carol Ross, a 20 year breast cancer survivor from Fair Haven, Vermont sat with me for a few minutes on February 28, 2018 to share her own story of survival. One of the many Vermonters guest and residents of the state have the pleasure of meeting and chatting it up with! We sat down for a few minutes that day. A month later and I can still feel how emotional it was for her to re-telling the experience. 

Like many women, Carol went in for a routine mammogram, leaving without worry or concern, to then receiving a phone call the next day. She recalls being with her friend at the time, cleaning houses when the call came in, "You are going to tell me I’ve got cancer... While that phone call took place twenty years prior, for Carol and most women, it's a life altering moment in time, and a heavy memory.

To be a passing stranger on a big trip cross country, sitting with Carol, being reminded of how precious it is to be alive was a gift. Each person who takes time out of their day to share their own personal experience with this disease is not something to be taken for granted. It's also not possible without the support of a community.

I asked Carol how she pushed through the challenges of having to experience a full mastectomy of her left breast, recovery, treatments, being a mother, and devoted employee? How did survive the disease and how did she manage the impact breast cancer has on one's life as a whole.  

"The support of family, friends and community. I am a Christian and had a significant amount of support from the local church communities, praying for me and offering what they could to see me survive. I think that’s what gave me the strength to get to where I am today - a proud survivor."

Carol celebrated her 20th year of being cancer free in March of 2018 and had these words to share on how surviving cancer impacted her life for the better, "I try to take every day as it comes, sometimes it’s hard and then I have to back it up to say, wait, you are here, you could have been gone.” 

To others who read her story, "LIVE LIFE TO THE FULLEST!"

 
 
 

"My life literally flipped upside down..."

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"I went in for my very first mammogram February 22, 2017, and within an hour and a half, my cell phone was ringing off the hook from 3 different doctors wanting to schedule a biopsy as soon as possible. My life literally flipped upside down from that moment" ~ Christie Schwab

Christie Schwab, a Pennsylvania native who now calls the Finger Lakes of New York home, with husband John, daughter Olivia, and pup Rosie. She went in for her annual gynecology exam when she turned 40 in 2016. At the time, they made light of her needing to have her first mammogram, "Happy birthday, here’s your script for a mammogram, welcome to your 40s!" Being an active, otherwise healthy, working professional with a busy family, "I took the script, not even sure what I did with it." Christie recalls.

Later in the year, Christie would come across an appointment reminder for her upcoming routine visit with her gynecologist, and remembered she still needed to schedule her mammogram before that appointment. Now 41, Christie would be experiencing her first mammogram.

Going into the appointment, Christie recalls everyone making light of it, being her first time, she laughs, "This is so ridiculous the things we have to go thru as a woman." Reflecting back on the experience, Christie recalls how the technician performing

the procedure had changed her tone. "It took a little bit longer, I think, than it was suppose to," as they had kept repositioning her left breast. 

"I went back to the office, working, and an hour and a half later, cell phone kept ringing, another phone number, and another phone number. My phone just kept ringing."

"I finally answered, and here it was a Doctor (from Crouse Breast Center) saying he had just been asked to review my mammogram, and there were some alarming calcifications that are not in a normal formation, they needed to get a biopsy."

"I had a lengthy conversation, he was amazing, gave me his cell phone, you are going to go home tonight and your mind is going to wonder. There was a mass, but not a tumor mass, but a mass of crystallizations."

Christie would call the doctor back three times that day, called her husband, and was physically shaking. "My life literally flipped upside down from that moment. I knew something was not ok."

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 The  Positively Pink Package  Christie received to support her through the process of being treated for breast cancer. 

The Positively Pink Package Christie received to support her through the process of being treated for breast cancer. 

Christie and her husband John would return to Crouse Breast Center on February 27, 2017 for her biopsy. "I was freezing cold. Every time I thought about it, I went cold. They laid me on the table, the doctor showed me my mammogram, they new it was DCIS (Ductal carcinoma in situ). Before doing the biopsy they were telling me I had breast cancer, and if it was what they think it is, they will not be able to save the breast."

"Right there I started crying, had not even had the biopsy yet.  I went back on the table and felt like a cow, your boob is hanging through the bottom of the table, they are tugging on it, you feel really alone in that moment."

They would complete her biopsy, "my whole boob turned purple right away, would not stop bleeding, it’s an awful experience." The sample was taken across the street to their diagnostic lab for immediate review, and within an hour they called back with results. It was explained to Christie that it was their hope for it to be early stage, and that they wouldn't have to be too invasive. However, the one breast (left) would have to be removed, with the option to remove both.

 “You are going to take both, I will never sit in this room ever again and have these words spoken to me. We were taking care of this. We were beating this. There would not be a second time ever.”

The hours to follow that day would be emotional for both Christie and her husband John. "My husband and I hardly spoke to each other, we just didn’t know what to say. I remember sitting there. I didn’t cry, I was shaking. He was watching and waiting for me to completely break down. I got that cold sensation, my voice was shaking, I could hear it. I kept it together. I didn’t cry." 

"My wheels were turning, we are going to get through this, and I focused on my little girl. I will NOT allow this to take over."
 Christie Schwab, 42, at her home in Owasco, New York, enjoying a hot cup of tea. // February 5, 2018.

Christie Schwab, 42, at her home in Owasco, New York, enjoying a hot cup of tea. // February 5, 2018.

"I made it a point the day they diagnosed me this was not going to take over my life, this was not the end, this was not going to change me, it did change me, but it did not change our life."

Christie and her husband knew they needed to let members of their family know, "One of the hard parts about any of this was telling people. You don’t even know where to start, but you need to get it out. If I talk about this, it’s making it real, maybe I’ll stop shaking." One of the hardest phone calls she would have to make, was to her father, "I didn’t want to tell my dad. Telling my family. I just relive that. The thoughts, the reactions, I wasn’t there, I couldn’t sit in a room with them. Every time I talked to my dad he cried. I got to the point where I didn’t want to call him because he just cried. It just killed me."

Together they would share the news with close family and friends. They new in those early moments, they wanted to do everything in their power to minimize the impact on their daughter. She was 8 years old at the time, and her experience with "cancer" was one of unhappy endings. With the help of close friends, they welcomed the support and filled her days with sleep-overs when necessary, and after school play-dates. While she knew her mom was sick and had to have surgery, they did their best to hold-off on using the word "cancer" at that time. 

 Christie being greeted by their family pup Rosie at her home in Owasco, New York // February 5, 2018.

Christie being greeted by their family pup Rosie at her home in Owasco, New York // February 5, 2018.

The day of Christie's double mastectomy had come, "I had no idea what to expect, when they say “mastecomy” I think of a massacre! What am I gonna look like? They are chopping them off! What in the world is going to become of me after all of this?" Unless you have already experienced what Christie was about to undertake, one can only imagine the worse case scenario, and with that comes fears of the unknown.

From how she would look post-surgery, to chemotherapy, radiation, hormone therapy (her tumor was estrogen fed), Christie's mind was flooded with fears and worry. "I am so scared of how it’s going to change me in ways I won’t have control over. Sex is important to the two of us, we have always connected in that way, and I just knew hormones would change my relationship with my husband."

"Not only that, my body image. I was always a pretty fit person, and always put so much emphasis on how I felt, and like every other women in the world, look at themselves in the mirror, picking themselves apart, never satisfied, and didn’t know how that was going to change."

It was the evening before her surgery and their close friends had been listening to Christie's fears and worries leading up to this important day. "I’m not worried about my house getting cleaned, the things I worried about were: I’m going to run out of Q-tips, who’s going to get Q-tips for John, he likes to use Q-tips for everything!” They brought her a giant care package of "stuff", a case of Q-tips, and ridiculous things which made her laugh. Additionally, they had pooled together a schedule of meals, and support with looking after her daughter while she recovered from surgery.

"That is what I worried about, Q-tips and who was going to take care of my daughter." 

The next morning, March 24, 2017,  would be the second time Christie would remember crying. "It was a weird feeling. I was kinda calm, didn’t feel overwhelmed, didn’t feel like I was going to break-down. They had to do this mapping, where they shoot radioactive dye into your lymphatic system. I was laying there on the table, laying there (husband sitting across from her), looking up at the ceiling, and examining the ceiling tiles. You have no idea how many ceiling tiles you kinda count! Oh maybe they need to replace those. Oh this must be a well taken care of hospital... These are the things that go through your head! This place needs some updates. Is this the right place for me to have this surgery? Is it clean enough, am I going to get an infection?" 

"Laying there and your mind just wonders about the most ridiculous things. I laid there just feeling very alone, for whatever reason. I laid there and the tears were running out of my eyes. I couldn’t control it, they shot dye into my system because they were looking for more cancer. Looking to find more cancer, that flipped a switch in my head."

Christie would come out of surgery to learn her cancer had spread to her lymph nodes (they removed 15 lymph nodes), which meant it was not early detection, and reality of being sick for awhile sunk in. Up to this moment, they had been able to avoid sharing with their daughter that her mom had cancer. Christie was terrified of her daughter seeing her in such a way. Though with the support of family, friends and husband, they would get through the recovery period as they prepared for the next phase of treatment - chemotherapy.

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One of the great many challenges faced by those impacted by cancer, losing control over important aspects of life/living. They do advise cancer patients who are preparing for chemotherapy to consider cutting their hair before treatment begins, and being fitted for a wig. While cutting her hair and acquiring an adorable new look was within her comfort zone, being fitted for a wig was not, and something she held off on doing till she had no choice but to go. She was, at the time, one week out from her first chemo treatment, and this too was something she had no control over, yet had to get thru it. 

The morning of her wig-fitting, Christie would have a welcome surprise as two of her close friends found out the date she was going, and took the day off from work. They were not going to let her go through this on her own. In sitting with Christie, one learns quickly she is a driven woman, unafraid to do what has to be done. In that moment, she did not want to do what had to be done.

"I am not going in there. I’m not doing this. The car is running, it’s freezing cold and all of sudden I grabbed my purse and went running into the shop. I don’t know what came over me, not like me. I just go out, slammed the door!

"I walked in and had this attitude with the lady. I was just like “show me what you’ve got.” I was miserable, and acted like it was her fault I was there, so mad I was there, but knew I had to do it." 

"After awhile, I don’t know what changed my attitude, but we were laughing. We were all trying on the sillier looking wigs, making light of the whole thing. We settled down and picked a handful to try on for real. I put one of the wigs on and started crying, hyperventilating, and began having an anxiety attack."

"I can’t do this! I can’t do this! I CAN do this! Suck it up!  Just do it!"

She did it! They found her a beautiful wig that matched her natural hair color, and one which would later prove to fool even those, who at a later date, knew she lost her hair from chemotherapy. However, despite finding the perfect match, Christie would never come to find comfort in wearing the wig.

"I always had a problem with it.  I put it in my closest and it sat on the floor for a very long time, but one day I had to put it on. I had to go to work. I felt ridiculous putting it on."

"I don’t want people looking me. I don’t like to be the center of attention. I don’t want people looking at me, and felt like everyone was looking at me. They knew I lost my hair, and now all of sudden I’m walking around with this silky beautiful mane of hair. I felt so uncomfortable."

She would later come to understand why she never came around to wearing the wig. Christie explained how she has never been, or needed to be, one who managed a routine around her hair style/look. Not one to own hair product and kept a hair dryer on hand for those days when it's too cold to leave the house with a wet head of hair. However, she shares, “this wig was just so perfectly done, you couldn’t mess it up.” Despite the wig being of natural hair, in wearing the wig, for Christie, it was not a natural reflection of herself. 

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"I have sick sense of humor about that stupid wig. I use to call it the dead squirrel. I would get in the  car, take it off and toss into the backseat, then you’d walk past my car and look, "oh my god it looks like a dead squirrel!” Just this furry little thing in a ball in the back of my car. I hated that thing!"

Christie is still living her breast cancer story, and while we talked over hot tea at her home in Owasco, NY on the morning of February 5, 2018, not even a year since going in for her first mammogram, she reflects on how the diagnosis did changed her. From February 27, 2017 to current day, she had 1 biopsy, bilateral mastectomy where they removed 15 lymph nodes, 14 weeks of chemo, 2 weeks in the hospital on major antibiotics for mastitis, surgery to remove one implant and replace due to infection, 3 additional weeks of at home IV antibiotics, and 6 weeks of radiation. All of this while working full time, raising a 9 year old daughter, and trying to keep her life as normal as possible.

"The hardest part of this whole process was I had no control over the majority of my whole past year."

It's easy to take for granted how fortunate we are to make choices for ourself, unless we are faced with a challenge which dictates the choices we must make. Listening to Christie share to detail the challenges of 2017, from having to endure two major surgeries which required her to live day-to-day with drains coming out of their body, to being so sick from a post surgery infection that prevented her from being with her daughter for an extended period of time, to letting go of the old image of herself, now embracing her new self.

Christie, while never a Girl Scout, is one at heart. She thrives to be active, spending time outside camping, fishing, walking, working in the yard. Name an outdoor activity and there is a good chance Christie would be up for it. While she and her husband made sure their daughter's active lifestyle was unaltered, unfortunately for Christie, due to the effects of treatment (chemotherapy, radiation, and hormone therapy), a compromised immune system, her active lifestyle came to a halt. The impact of treatment for breast cancer alters the body's abilities to be at it's best. 

The impact of breast cancer on women particularly (men are susceptible to the disease) is humbling. Christie, despite having to let get and welcome what comes with choosing to survive and thrive, has kept her humor and wit, "People don’t realize the weight gain that comes with this type of cancer. I always joked that I had to go and get the fat cancer, and not the skinny cancer." She acknowledges that's a bad joke, however, the vast majority of women treated for breast cancer not only have to let go of a life they once knew, they are often forced to let go of a body they once knew.

For Christie, her husband and daughter, their story and how breast cancer has come to impact their lives is still unfolding. They still relive the experience every time she goes in for a scan, where she knows they are looking for cancer, and just hoping they come back with positive news. It's very stressful and many women suffer from post traumatic stress disorder (PTSD) as a result, Christie included.

"People say I was so graceful (in how she's handled her experience), but I had no choice to get through it the way I got through it.  I had a child watching my every move." 

Through all this, in the lowest of moments, being a mother and the love a mother has for her daughter, clearly played a significant role in Christie's ability to dig deep for strength and will to "get through." While she managed to maintain as normal of a life as possible for her family, not allowing breast cancer to take over or change their way of living, it did change her perspective on life. Life is to celebrated and lived regardless of cancer. 

 For Christmas Christie gifted her husband (and self) this little pine box as a reminder to do what they want to do. 

For Christmas Christie gifted her husband (and self) this little pine box as a reminder to do what they want to do. 

"We work double hard for something I hope we both get to enjoy someday. Stock piling money in the retirement for someday. I get it, it’s important and we want to be able to retire.  To live a good live and travel like we always wanted to, but at the same time, why couldn’t we spend a little of that money now and travel with our daughter while we are healthy." ~ Christie Schwab / Breast Cancer Thriver
 
 Twenty-four year breast cancer surviver Judy Martin, 78, in Saranac Lake, NY // February 26, 2018

Twenty-four year breast cancer surviver Judy Martin, 78, in Saranac Lake, NY // February 26, 2018

"The main thing from all the things I did was that you are doing something, you are being proactive, you are not waiting around for someone to come heal you, make you better. It might be a mental thing, but leave no stone unturned." ~ Judy Martin

The word "cancer" is an instant killer of all joyful thoughts. Though one can argue finding the joy in even the most devastating diagnosis can inspire both emotional and physical healing. Baylee Anniss, 24 (pictured below) is one of the most joyful and loving young woman I've had the pleasure of working with long before this project came to be. On the afternoon of Monday, February 26, 2018, I had the distinct pleasure of meeting one of the woman in Baylee's life who taught her to always laugh through life's adversities, her grandmother Judy Martin (pictured above).

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Judy Martin is a twenty-four year breast cancer survivor, though amongst her family they often forget she endured and survived the disease. A woman undefined by what she has survived. Instead, it's her smile and infectious laugh, a positive attitude with a heavy dose of believing in anything being possible. While Baylee was only a year old at the time of Judy's diagnosis in 1994, otherwise unaware of her grandmother's experience with the disease, as the family rarely spoke of it, now possesses many of Judy's core life values.

Barely a year after losing their home to fire, on December 27, 1993 Judy would go in for a routine mammogram and because of the dense nature of her breasts, was often challenging to acquire clear images of her breasts. In addition, for the years prior had undergone many biopsies due to fibrosis, a common ailment in women and one which historically had not been tied to breast cancer. Having just lost her home and her experience with fibroids, would continue on with life as it was at the time.

Living with fibrosis, Judy was accustomed to feeling lumps and bumps in her breast. "I would just go for the biopsies and never gave it much thought." Though in February of 1994, while showering and doing a routine self-exam discovered a lump unlike what she's come to expect. It was puffy and not hard. It was also larger and inspired her to call her doctor in Saranac Lake who advised keeping an eye on it, though Judy had an awful feeling.

A month later the lump had grown and Judy asked to be seen by her doctor. They performed a needle biopsy where they expected to find fluid, as is often the case with a cyst and routine finding for Judy. Though during the procedure they were not able to extract any fluid and her doctor opted to call Judy's surgeon for a second opinion. It was during this time Judy felt true fear. 

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"White fright, it is white, the fear is so bad, it's icy." ~ Judy Martin

In these moments, one wants answers. Her physician reached out to the surgeon, whose schedule at the time was full and could see Judy for a few weeks time. She felt strongly this was not something to wait a few weeks on, especially as the mass had grown significantly over the course of a month. Judy insisted she would not wait a few weeks and remained persistent. Her surgeon made the time to see her sooner.

Judy would undergo an additional biopsy and the sample sent to another lab for diagnostics, which was on a Wednesday. The surgeon informed her and her husband they'd have answers by that Friday. What may have only been a few days, feels like weeks when you are waiting such important news. Judy and her husband kept busy. In fact, Judy was attending bridge club at her mom's when she the call came from her surgeon, who insisted, "I want to see you and your husband on Monday."

His urgency in seeing them, "That's how I knew," Judy continued. She knew it wasn't another fibroid.

Judy had researched on her own how best to manage times like this. That weekend, while Judy and her husband had no other choice than to weather the unknown, knew laughter was the best way to pass the time. She and her husband spent the weekend enjoying old movies like Lady in Red and anything with Gene Wildner. She had also bought a book recommended by her doctor, 'Dr. Susan Love's Breast Book'. Baylee recalls,  "Mom keeps it in the house, it's been on every bookshelf we've ever had!"

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Judy would be diagnosed with hormone receptor positive breast cancer, which for younger women who have not reached the age range for menopause have a harder road to recovery, as it's a cancer which "feeds" off of hormones. Judy was 55 at the time of her diagnosis. The older we come as women, the less active our body is as producing the hormones which feed cancers of this type. 

Judy had done a significant amount of research on her own and after weighing the options chose to undergo a lumpectomy. At the time (mid-1990s) it was still a fairly new procedure and her surgeon, who she wanted to perform the procedure, had never done one before. He was extremely hesitant because historically had always performed a mastectomy in all breast cancer cases. It was safe and in his experience at the time led to better rates of survival. Judy took this into consideration and if her surgeon would not perform the procedure, there was a breast cancer center in Rochester, NY. 

Though Judy was determined to retain the surgeon she felt most confident in. It took a great deal of convincing and they managed to convince him to perform the procedure, "I"ll be the best patient you ever had. You won't be sorry!" as they talked him into taking on the surgery. Her husband asked the surgeon, "Doctor, how many of these surgeries have you done?" knowing full well he'd never done one!

 

Judy was very brave to go ahead with a fairly new procedure and a surgeon who had never performed it. The trust and respect between doctor and patient is an important piece to the recovery puzzle. Her surgeon went above and beyond, was extremely cautious and conservative to ensure clean margins were achieved. Meaning he took necessary steps during the surgery to ensure the cancer could not return

Due to the removal of every lymph node in the region (42 in total with five confirmed cancerous), which was due to the surgeon remaining cautious and not common practice today, Judy did have a lengthier recovery from surgery to ensure no future conditions related to edema in the area. She was ok with all of this. To this day expresses how pleased she was with her surgeon and the work he did. It's been twenty-four years and one would never know she had cancer!

In fact, during those times, Judy kept her diagnosis of breast cancer much to herself and simply lived with breast cancer, taking every step she could to see through the experience of the disease. This would lead her down a path of self discovery and connecting with her Native American heritage. From researching what was in her food, avoiding anything treated with hormones (given her cancer was hormone fed) and welcoming her sister Sarah's passion for Native American medicine.

"I was more afraid of the chemotherapy than I was the cancer," Judy shared, adding, "It kills everything to kill one thing and I knew that and was afraid I would be very ill."

Knowing how anxious Judy was to begin treatment, Sarah empowered her with methodology, prayers and totems to see her through the treatment. Whether or not it "worked" did not matter, it's about leaving nothing to chance. Judy believed (and still believes) it's important to try everything, it can't hurt you. 

"When chemotherapy ended they began radiation therapy right away. It was easy though scary because you are in a room all alone strapped down to a table. When the machine comes out there's a rattling noise, you know what's coming out of the ceiling." To see her through those treatments, Judy would repeat mantras and use visualization techniques. 

Judy's approach to healing herself during those months and maintaining a lifestyle which focused on letting go of anything and one who did not support the healing process are ways of life she has since passed on to her grandchildren. Baylee explained, "We were a family that grew up sort of religionless and I picked up early in my life on our ties to Native America traditions. Looking to the earth and all that is outside the body, taking a look around and finding solutions to healing in this way."

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Baylee explains that in addition to learning how important laughter is to one's overall wellness, "Being able to take over power of your own body, even in the smallest of ways, something our whole family values." 
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Baylee and Judy at home in Saranac Lake, New York, February 26, 2018.

During the fall of 2017, while contracted by Breast Cancer Research Foundation (BCRF), photographer Jennifer Langille was assigned to spent a day with Larissa Podermanski. The work was for a series of "day-in-the-life" features of women with the disease. While having been working with BCRF for a year, Larissa's passion to live despite her diagnosis was a life-changing experience for Jennifer. The work with BCRF came to its conclusion, however, the seed was planted to investigate further the impact this disease is having on communities across the country.

"Metastatic breast cancer is considered rare in young women my age (always knew I was special) I started off scared to turn 30 now I hope to see 40." ~ Larissa Podermanski / Metastatically Speaking

Below is photo essay created while working with Larissa, her husband, beloved dogs, family, and friends. Each of them forever impacted by Larissa's diagnosis and Jennifer's reminder to why every story matters. Larissa passed on May 10, 2018 and this project is very much in her honor.

Please take the time to read Larissa's story:  Metastatically Speaking @metastatically_speaking

 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.
 Patty Blowers, 56 pictured with her husband "Bing" and pup Hannah at their home in Moravia, New York // February 4, 2018

Patty Blowers, 56 pictured with her husband "Bing" and pup Hannah at their home in Moravia, New York // February 4, 2018

"I am a 10 year survivor of Breast Cancer, diagnosed in October of 2007 through a routine mammogram. There was no history in my family. At that time, had just recently been on a protein diet which included walking every day. I carried my then flip cell phone in my bra right where the tumor appeared on the mammogram. There is no proof that the cell phone caused the cancer, but there is no proof that it didn’t. It scares me when I see anyone with a cell tucked in their bra." ~ Patty Blowers

Patty underwent routine mammograms, and until that year they had always been clear. "I almost didn’t go that day (for her scheduled mammogram). Oh god another mammogram, I didn’t want to do that!"  She had been walking daily with her dog, stashing her cellphone, like so many women do, in her bra. "I went for that mammogram and there it was…" The tumor was coincidently in the exact location of where she tucked her cell phone on those daily walks. 

A few weeks after Patty received news of her tumor being cancerous (she has no family history of breast cancer), her husband Bernard 'Bing', eight years her senior, was diagnosed with throat cancer. Faith would have it, each would juggle their own treatment schedules (chemo, radiation, surgeries, etc.) However, the procedures for fighting each are very different. For Patty, the moment they diagnosed the tumor, surgery was scheduled and additional treatments to prevent the cancer from returning followed in quick procession.

For her husband, he first had to undergo chemotherapy/radiation and a course of action to prepare the region affected by the cancer for surgery. While his wife's cancer was being address quickly, for him, it was a much longer process. He had to live with the cancer inside of him, meanwhile enduring a course of treatment which significantly impacted his will to fight. When I asked Patty what helped her see through the challenging days she shared, "it was him, I saw him giving up."

 Patty's husband, 62, enjoying a playful moment on the couch with their dogs. Recently retired and currently "cancer free" // February 3, 2018.

Patty's husband, 62, enjoying a playful moment on the couch with their dogs. Recently retired and currently "cancer free" // February 3, 2018.

"As soon as he was diagnosed and knew what he had, he was ready to say that’s it, he didn’t have any fight. At first I hadn’t realized he was giving up."

While Patty was still working full-time and tending to her own course of treatment for breast cancer, began noticing her husband's response to what was required of him to overcome his own battle, was not what it needed to be to ensure he survived. 

"Why are you not doing what you are suppose to be doing?!?" she'd ask. "He’d sit there and say nothing, absolutely nothing. It became a battle, and I finally came around in my head." Patty realized his will to live was not there, and would soon after go into work, share with her boss what was going on at home. Informing her employer she was needed at home.

"I started going with him to his appointments and spoke with his doctor. They hooked him up with someone who had been in a similar situation as him." 

Patty pays tribute to the gentleman who talked with her husband, reassuring him and encouraging him, though as she spoke, from the other room I hear Bing say softly, "It wasn’t him, it was you."

 Patty with their 4 month old Akita Chella while their smallest pup Mocha sits with her husband during our time together at their home in Moravia, New York // February 3, 2018.

Patty with their 4 month old Akita Chella while their smallest pup Mocha sits with her husband during our time together at their home in Moravia, New York // February 3, 2018.

 
"She kicked my butt!" ~ Bing

"I didn’t know if it was him (the fellow throat cancer survivor), he did not have any fight at all. I did, but I am that way anyways. This isn’t it for me! I really just wanted my situation over with. It was hard to focus on me at the time, there was a lot of emotions going on."

While Patty reflected on those days, and the emotions of battling her own fight and making sure her husband did not give up on his own struggle with cancer. Her husband once again, softly from the other room, "In the meantime she was bowling in the Masters!" Which took me by surprise and soon noticed I was in-fact surrounded by mementos of someone with a passion for knocking down the pins!

I think between the two of us we are extremely lucky, blessed and very thankful."

"You just never know how devastating this can be to your life.

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Patty smiled, and began to explain how her surgeon at the time recognized she needed something non-related to cancer to focus on.  She was a mess between her own care and that of her husband's, life altering experiences only those who've shared the same "shoes" can know.

She explained, "Bowling is my thing, I’m going to focus on that right now and the Masters is a month long tournament and I did! I ended up being in the finals that year!" Both Patty and her husband lit up! 

 Bing and Patty with pups Hannah and Chella at their Moravia, New York home // February 3, 2018.

Bing and Patty with pups Hannah and Chella at their Moravia, New York home // February 3, 2018.

"I know now, at this point in life, we would not be retired. Through the course of ten years I’ve definitely felt that my lifespan has been shortened. I’m 56 years old now, and feel like I don’t have 80 years. Maybe I’ve got 70, you don’t know, nobody knows." 
~ Patty Blowers, Breast Cancer Survivor