Lisa Carlin

Photo: Ladybug Photography Dress: Strand, The Boutique

FOR LISA CARLIN, FIGHTING BREAST CANCER WAS ABOUT ADDING PURPOSE AND COLOR TO EVERY MOMENT WITH HER FAMILY, EVERY MOMENT IN TREATMENT, EVERY MOMENT SHE HEALED. HER NEW SHOE LINE, POPPIES WITH PURPOSE, INJECTS THAT COLOR AND PURPOSE INTO EVERY PRETTY STEP YOU TAKE.

I was 37.

Who gets breast cancer at 37?

Apparently me.

This was 10 years ago and I had just decided after many years as a working professional, that I wanted to stay home with my two girls who were 2 and 4 at the time. I loved my job working in the commercial interior design and architecture industry. I was surrounded and inspired by creative, talented, smart and fun people every single day. My career was a big piece of my identity. My husband had taken a new job two years earlier when our youngest daughter, Lyla was born. It wasn’t just a job, it was a new way of life for our family because he started working nights. His hours were completely opposite of ours. He started work at 6 p.m. and crawled into bed at 5 a.m. He loved it but we were two ships passing in the night with our opposite schedules, all while trying to raise our two young daughters, juggle childcare and the hustle of daily city-living in Boston. Life just got too busy and hectic so we decided it was time for me to just be mom. I recall worrying about stepping away from my career, and a dear friend at work said “you will never look back and regret taking time to be with your girls. You will regret not taking it.” It was the best decision I made. They were 2.5 and 4.5 at the time, summer was just starting and everyday was our day. “How long should we stay at the park today? Which park did we want to visit? Do we get in the car (no!) to run errands? Should we skip dinner and get ice cream?” Oh, what I’d do to go back to those days. Life was way less hectic. Life was good. We loved our new routine.

Like anything that changes the direction of your life, you never forget the moment it happens. It was January 2013, I started noticing a random discomfort feeling in my right breast. It continued on for a few weeks and then one day I felt a knot, about the size of a pencil eraser head. Seemed strange. I made my husband feel it to make sure I wasn’t imagining it and he casually said, “go get it checked out. It’s probably nothing, but it can’t hurt.” THANK GOODNESS I listened ( I don’t always!). I was able to get a doctor appointment within a few days but it wasn’t with my primary care doctor, who I loved. I saw another female doctor in the practice and I’ll never forget her name, Dr. Rhonda Rockett. To this day, I believe she saved my life and may not even know it, but I do and I am so grateful! I vividly remember Lyla, my youngest daughter, was with me at that doctor appointment. She was sitting in the guest chair sucking on her lollipop, not a worry in the world for a 2.5 year old. I wasn’t worried either until Dr. Rockett said, “You know what, let’s not mess around here. I want you to go get a mammogram.”

“What!? Ummmmm, I am only 37. I exercise. I eat healthy (most of the time). I get my sleep. I drink caffeine and alcohol in moderation. I am doing all the things I am supposed to be doing. Age 40 is when I am supposed to have a mammogram done, not now. ”

Well, ok, I thought, she’s totally being cautious. That’s what a doctor should do. So, I pulled my thoughts together, while staring at Lyla with her lollipop and said, “Ok. I can get a mammogram, no problem. When?” Tomorrow at 7:30 a.m. Wow. She was not messing around. UGH!

Remember how I said my husband worked nights? Well, any morning appointment required finding help when it came to the girls, since he slept until 11 a.m. I was not too worried about this appointment. I’ve got this. No need to come with me. I’ll get help with the girls and I’ll just go by myself. How bad could the mammogram be?!

That morning, I remember walking into the waiting room and I was by far, the youngest woman there by at least 20 years. I felt like I should have been there with my mom or my grandma. But I was there for me and started to really let my head go down a dark hole with all the “what if’s.” I managed to pull myself out of this for a moment, but two mammograms done, original and then a redo, I was now being walked into the outpatient surgery room for a biopsy with the head oncologist. Now, I was scared—terrified actually. What did all of this mean? There was a cluster of cells on the imagery that they wanted to explore closer. Now, I did wish my mom or husband had come with me.

Naturally, this all happened on a Friday and they told me I’d hear back the following week. “The following week?!” What?! Are you kidding? How do I go about my life after 4 hours of scans and biopsies? So I waited for the results. Saturday turned to Sunday, into Monday. They were long days of mindless worrying. We got through the weekend, which happened to be our 9th wedding anniversary. We mustered the energy to go out to a nice dinner and tried to celebrate. The night is still clear as day, I recall thinking, “Whatever this is, we are going to get through it.” Well, that Monday afternoon, we were out at the park, per our usual routine, and I got the phone call from the doctor. The biopsy confirmed, I had breast cancer.

Silence.

My husband and I just looked at each other and then at our girls and started crying. I instantly thought I was going to die. How can this be happening!? My head was swirling. At that moment, I happened to be with one of my dearest friends, who works in the medical field. She immediately sprang into action and reached out to some trusted doctors she knew and asked, “who would you send your wife to if she was diagnosed with cancer?” Three of the 5 doctors came back immediately with the same name, Dr. Barbara Smith. She specialized in women under 40. I never win raffles or scratch tickets, but I can now say I won the lottery finding Dr. Smith because I am here, sharing my story, and getting to watch my daughters turn 13 and 15 this spring.

Meeting with Dr. Smith and her team at MGH was where the real journey began. It was truly drinking from a fire hose with all the information coming at us. It honestly felt like they were speaking a different language. They were but it was their language that they knew very well. We were now along for the ride and putting all trust (aka my life) in their hands. Where do we start?

We started with the conversation around a mastectomy to truly see how much the cancer cells were traveling. “How can this be my life?” I remember thinking. I was just having the most wonderful days hanging with my girls at the park, feeling like life was good. Now six months later, I am discussing taking my boobs off with no known outcome and maybe a discovery that I don’t want to know about inside. All I kept thinking about was why the hell would I want to go through with another surgery like this if there’s a chance it could come back on the other side. DONE. Take both. I don’t want to worry about this again. But wait, I am still young and want to wear bathing suits, dresses, and feel like a lady. So many conflicting emotions and hard decisions to make. How do I explain to my 2.5 and 4.5 year-old girls that I was heading to hospital for surgery and won’t see them for a few days let alone be able to lift them for weeks. My heart was melting. Thankfully, we had so much help from family and friends, they didn’t miss us for a second. Cancer is a horrible toxin that invades the body yet ironically brings out the very best in most people.

Surgery day arrived. It was an early morning in April and I was quiet and very nervous. The hospital was cold. My husband was right by my side, like he always was. I, on the other hand, was facing my reality. “What are they going to find? Did it spread? What am I going to feel like after my surgery and what will my body look like? What the hell was this cancer doing? Was it spreading? What if they don’t get it all? When will I be able to exercise again? Will I run again? When can I hold my girls and take them to the park?” My mind was spinning as I was rolled into surgery.

BOOM.

“I woke up in recovery and realized that I couldn’t really move. I was bandaged so tight. Six hours had passed. There was my husband, right next to me keeping our families in the know throughout the whole ordeal and what a freaking ordeal this was. ”

Someone I had connected with, who also had very young children and also had a double mastectomy, told me she left the hospital and checked into a hotel for a few days so she could rest and heal. The minute my mom got wind of that idea, she made it happen. She took care of the girls in our small city home and sent us to the Four Seasons. I know I am lucky that I was able to recover there, but all I remember from the first two nights was the most excruciating pain ever waking me up in the middle of the night. Pain so intense it brought tears to my eyes. Plus I had tubes literally sewn into the sides of my body to drain all of the fluids. It was pain like I have never felt before. Those few days were really tough. The highlight of each day was my girls coming over to swim in the hotel pool, while I sat and watched. Thankfully, life was great for them and they didn’t really miss a beat.

Now we wait for the result of the pathology report from the surgery. It felt like an eternity, and it was not what I expected to hear. The cancer had spread to two of the five lymph nodes they took out of my armpits which meant it was super aggressive and moving fast. “What was happening? What the hell does this mean now?” Chemo. That’s what it means. This was the moment I remember feeling so defeated. I sobbed and sobbed and said it out loud, “I don’t want to die. I just can’t. Not now!” There was my husband, holding me together.

It was not long after this moment, I had to dig deep and figure out how to find strength to move forward. I swear those little girls, my incredible family and friends got me through that dark time. I had no choice but to keep going. And that’s what I did—for them.That was when I decided I was going to wear my pink ballet flats to chemo. I was going to pull myself together, so that even when I was losing my hair and eventually bald, I still felt like I was powering through this really dark time in my life. Little did I know that 10 years later those pink ballet flats would inspire a brand with meaning and purpose that I can share with so many going through cancer treatment, and help bring people together during a very tough time. My wish is that every pair of Poppies with Purpose shoes will help carry every cancer fighter through their dark clouds and bring them a bright spot. Everyone deserves it.

The chemo journey started off with a bang. IVs with fluids to hydrate me, Benadryl to help with any reaction, and then the red devil called AC. It was red, I peed red after it was done. The bag itself said “hazardous” on it. I remember thinking, “Well this is not good.” It knocked me on my feet. This became my full-time job because I’d be at the hospital sometimes for four to six hours. I always had someone with me, usually my husband, but for those eight doses I received every other week, I was never alone. My mother did what she does best. She quilted the most perfect lap quilt for me to take to the hospital because it was always so cold. The best part was that the quilt fabric was actually my grandmother’s “duster” that she wore around the house, wearing her curlers, drinking her coffee. Little did I know that quilt would inspire the name of Poppies with Purpose. It was a bright, cheerful pattern with bright orange poppies. I just loved it and still use it today.

Chemo brought the highs and lows, but we figured out the final meds combination so the nausea diminished after each treatment and so did my hair. That was tough especially because I had long, dark, thick-ish hair that I loved. It was part of who I was. My girls loved brushing it. Clare, our oldest, loved to sit and braid it. It started to fall out in clumps after the second chemo session. I knew then it was time to invest in a wig especially because we had two family weddings that fall and I did not want to show up looking like ‘the cancer patient.’ So, I enlisted my all time favorite hair stylist, Tim, to shave my head surrounded by family. We all cried! I have to say, I did get the best wig and I still have it and see it everyday in my closet. It is a part of me and my life that changed me to the core. I can’t quite part with it, not sure why. Chemo lasted all summer and we all got into a routine with it. I wore a lot of big floppy hats to hide my bald head, but sometimes I’d just be bald and in my bathing suit on the beach with my girls. I got a lot of “pity looks,” but you know what, I smiled and thought, “I am ok and I am here.”

I was never happier to be done with the chemo journey, but what I wasn’t expecting was how long the radiation would be. Six weeks, five days a week was harder for me than every other week of intense IVs. I really struggled with it! Again, I had no choice but to power through it. My sister-in-law and I would sometimes put the kids in the stroller and walk or even jog, if I was up for it, to radiation. Yes, sounds crazy I know, but it helped me so much getting any amount of exercise in, especially going there.

I am such a believer in people showing up in your life for reasons bigger than we may ever know. Much like the mammogram moment, I too was one of the younger people in the radiation room. Until one day when I met a girl younger than me. Her name was Jen and we ended up on the same radiation schedule so I would see her a lot. She was such a bright light with her beautiful smile and energy. We always compared notes about what was working on our terribly scorched skin and juggling our own health while trying to raise our daughters. We got to know each other through that time and continued to stay in touch.

Jen passed away.

That was truly a defining moment that I felt like I needed to bring Poppies with Purpose to people like Jen’s daughter, who could put on a pair of pink shoes, think of her mom, and hopefully in time find a smile instead of tears in her memory.

Cancer really does suck. It’s so hard, it’s so messy, it’s emotionally and physically draining to the patient and everyone in their support system. If Poppies with Purpose can help brighten someone’s day on their tough journey and make an impact on the world of research, then I have found my bigger purpose during a really dark spot. It is time to make more rainbows, one colorful shoe at a time.

With color and purpose,

Lisa

Cathy McGrath + Maureen Cardinal

Maureen Cardinal (left) and Cathy McGrath

AFTER BEATING CANCER AT AGE 40, CATHY MCGRATH WAS DETERMINED TO ADD A BIT OF DIGNITY BACK INTO THE PAINFUL AND RESTRICTIVE TREATMENT. SO SHE ASKED HERSELF, “WHAT WOULD JACKIE ONASSIS DO?”

WHEN I WAS 40 YEARS OLD, I WAS DIAGNOSED WITH BREAST CANCER. I HAD BEEN GOING TO MY OB-GYN FOR A YEAR COMPLAINING OF PAIN AND PRESSURE IN MY RIGHT BREAST. HE ASSURED ME THAT BREAST CANCER IS NOT PAINFUL AND NOT TO WORRY ABOUT IT. I WAS SLEEPING WITH A BRA ON BECAUSE THE PRESSURE WAS SO INTENSE. FINALLY, AFTER MY THIRD VISIT HE DID AN ULTRASOUND. THERE WAS A LUMP THE SIZE OF A CHICKPEA. IT DID NOT SHOW UP ON A MAMMOGRAM. I ASKED HIM TO SCHEDULE A SURGERY TO REMOVE IT. I WENT TO MY LOCAL CATHOLIC HOSPITAL, TOLD MY HUSBAND TO DROP ME OFF AND I WOULD PAGE HIM WHEN FINISHED TO PICK ME UP.

When I woke from this first surgery there were nuns around me praying. I thought I was dreaming. The surgeon said he was very sorry to report it was a very aggressive cancer and when he went to remove it, it scattered. He explained it was like mercury at the bottom of those old thermometers. We met with the hospital oncologist, and he told me and my husband that we should go home and get our affairs in order. We were both in shock and absolutely devastated and petrified. Our lives were literally turned upside down. We had 3 young children ages 7, 9, and 11.

I went into Boston to the Dana-Farber Cancer Institute to get a second opinion and hopefully a better plan. Which was breast surgery, a chemotherapy clinical trial, and radiation. I had a lumpectomy at Mass General Hospital but they could not get clean margins.

Then I woke from my third surgery at MGH, a mastectomy and reconstruction, with multiple post-surgical drains. These drains are tubes that collect fluid from the body through a clear bulb-like container—often called “grenades” because of their shape—and these drains hang by a few stitches where the surgical incisions were made. These drains are extremely painful and become heavier and more painful as they fill with the fluid coming from inside our bodies. I found it very difficult to manage doing simple tasks and handling the cumbersome tubes at the same time.

I asked the nurse how best to manage these drains. “Go to Home Depot and grab a tool belt,” she said. This seemed absurd to me. “Seriously? No one has thought of anything better to manage these drains?” “No,” she said. “But someone really needs to!”

I thought there needs to be a better way. The loss of dignity and control was devastating enough but wearing these drains around was too much. Plus, if I could figure it out, it would be my giveback to other women battling this disease. As I lay in the hospital bed clicking my morphine clicker, Princess Di popped up on my TV Screen. What would Princess Diana or Jackie Onassis wear if they had to endure this post-mastectomy trauma? There is no way they would be running out to Home Depot for a tool belt. So, the process began.

I sketched a design on a napkin and called my sister. She inherited the domestic gene, she is extremely talented at sewing, cooking and even baking. I do not sew, cannot even do a hem, but I do know style—and what a woman needs after a mastectomy. I explained what I needed her to sew: the sleeves need to open to hide the IV’s and have easy access for a blood pressure cuff, there should be pocketing along the bottom to hold the weight of the drains.

After my makeshift jacket, I went to my aunt, a professional seamstress, and redesigned a classic jacket. My design showed all-around pocketing to hold multiple post-surgical drains and allow for one-handed dressing. I added a drop down button for access to a port-a-cath and used Velcro to reduce the pain involved with getting dressed and to allow for easy access for post-surgery exams. But what my design did best, is restore the dignity and independence that we often take for granted with the seemingly simple task of putting on something pretty when we feel awful.

The product was named ‘Jacki’. No more Johnnie hospital robes (Jackie is a nickname for Johnnie and I also believe we all have a little Jackie Onassis in us!) It was everything the hospital Johnnie is not: incognito and with classic style and multiple custom features for all phases of treatment: surgery, chemotherapy, radiation, and physical therapy.

I had wonderful neighbors. One was a partner for a big Boston law firm. As Betty Hanley Esq. drove me into Boston for treatment, she explained how to file a patent and decided to take on this project pro bono. I filed for a 501c3 non-profit status to be able to give these garments free of charge. Then I met my neighbor/partner/friend Maureen, CEO, Program Director, Jack-of-all-trades, who took charge as we learned every step of this new venture. Maureen Cardinal is the real engine behind our success. I had the vision but Maureen brought it completely to life. My title was chief volunteer and I helped when able, consistently inconsistent.

We went to Polartec in Methuen, MA and presented the Jacki to then-CEO Michael Spillane (we were introduced by a middle school volleyball coach, Tom Holland). Within 10 minutes into the story the CEO said ‘I get it’ and we will donate material to your nonprofit to help produce these garments. We had to learn every aspect of the apparel business right down to the buttons. We also had to learn to write grants to fund the program, mostly to pharmaceutical and medical device companies like Genentech and Boston Scientific, for example.

We were very fortunate to have my old boss, Richard Trussell, come out of retirement as the CFO who ran all the accounting, inventory contracts, and vendors. The word spread and we had many, many people come volunteer. We had friends, family, and local mothers dedicate their time to help in our success; each one brought their talents and specific knowledge: Pam Connelly, Darlene Hall, Joan Johnston, Danielle Flynn, Chris Baker, Casey Cardinal, and over 33 students from North Andover High as well as our own sons and daughters, their friends, and college interns from Merrimack College. It truly did take a village to succeed.

We tested the Jacki in two top Boston hospitals with the help of my  cousin, Janet O’Connor, an oncology nurse. The Jacki received rave reviews and took off immediately. The surgeons who operate at more than one hospital often brought them to their patients outside of our test hospitals. Our program, this jacket, ignited a movement! It went from patient to patient, nurse to nurse, doctor to doctor. Dr. Mehra Golshan, then a young breast surgeon at Dana-Farber and now at Yale Cancer Center in Connecticut, said “I cannot express how wonderful this Jacki program is, across all corners the response has been a resounding “Yes” to the Jacki. In treating women with breast cancer, I can say that the dignity and care of my patients is my highest priority. The Jacki has allowed for the women to maintain their dignity during this most difficult of times.”

This is where the the story turns, it is the point where the story is no longer my own. It becomes the story of the 30,000+ incredibly strong, resourceful, amazing women we have helped to get back to daily life. Like the woman who delivered her father’s eulogy in a Jacki just days after her mastectomy. Or the woman who was released from the hospital in her Jacki so she could dance with her son at his wedding. Or the young mom who just wanted to make it to her daughter’s kindergarten open house without carrying around all those drains. Or the grandmother who wore her Jacki so she could get down on the floor and play Thomas the Tank with her 3-year-old grandson.

We know nothing is easy about this cancer diagnosis. Life just seems to get so much more complicated. We who have been through it, know that the mental game is just as hard as the physical game. The guilt, the fear, the anguish, the pain, is insurmountable.

We received hundreds of letters from these incredible women.

Two of my favorites are:

“Having been diagnosed with breast cancer and having surgery, a mastectomy, within 32 days of each other, and 6 hours of travel has been an exhausting, expensive, and emotional experience.  I almost did not have time to cry. However, when the breast nurse gave me the Jacki, I broke down and wept. Your gift of the Jacki made me feel like I could go forward. Looking smart, whole, feminine, and like myself. I cannot express my thanks to you enough.”  - Beth S., Maine

“Thank you so much for designing such a practical solution to a big problem post breast cancer surgery.  When the nurse told me about your program, tears came to my eyes. My body hurt, my heart hurt, and my soul hurt with my diagnosis, and now someone was helping me on the road to recovery. I am a mum of 3 young children, and my diagnosis shook our foundation. Breast cancer surgery recovery is tough with drains etc. Your solution gives women some dignity, fashion, and comfort during a very challenging time. Thank you to you and your sponsors.” -EQ, Massachusetts

Ultimately, our mission is to provide the Jacki free of charge to any woman who has to endure a mastectomy. The small quantities we were manufacturing in East Boston were very costly to produce even with the donated material from Polartec. We then learned of a place that manufactured samples in China. Maureen tackled all that was involved with overseas production, shipping, and communication, and we were able to lower our costs dramatically.

In 2013, we entered the MassChallenge start-up innovation contest, and we met a man who worked for Genzyme who was holding a class on obtaining Medicare health codes. We told him about our breast cancer garment and he said, “Lucky you, a breast cancer health-code is the easiest to obtain since wigs paved the way on emotional quality of life.” This was our “aha!” moment. It was time to do a clinical trial.

We went to Dr. Mehra Golshan and Dr. Margret Duggan, two compassionate and exceptional breast surgeons from Dana-Farber Cancer Institute. We joined forces with Dana-Farber and Faulkner Hospital to conduct a 3-year clinical trial. This led us to finally securing the government approval needed for the Medicare insurance code for the Jacki jacket, just like the mastectomy bra and camisole. The clinical trial was spearheaded by Dr. Donna Berry, the Director at Dana-Farber’s Phyllis F. Cantor Center for Research in Nursing and Patient Care Services. The Center conducts research on quality of life and care for cancer patients and families.

Proudly, the Jacki is now available with insurance reimbursement, with a prescription from your doctor or nurse practitioner, just like the bras and camisoles. We needed to spread this great news! Somehow we need it to go viral.

l-r: Maureen Cardinal and Cathy McGrath

Now Maureen and I are in our 60’s. YIKES!! I am most grateful to be here in my 60’s. A true gift given to me by the dedicated, compassionate nurses, surgeons, doctors, and their brilliant expertise at MGH.

We finally accomplished our goal of making the Jacki available to any woman enduring a mastectomy, without financial burden. We owe our success to hundreds of selfless people who volunteered behind the scenes and guided us through each phase of this unending learning curve. We are so honored to help those amazing women and men fighting not only for their lives, but for their lives back. It is an absolute privilege to help make such a difficult and private time just a little easier.

Learn more about The Jacki at www.thejacki.com