Diagnosed at age 37
A few months after my daughter Willow was born, I started feeling “off.” I was 37, very tired and getting headaches all the time. My primary care doctor performed a standard blood test and everything looked normal. I figured I was just sleep-deprived from caring for my newborn.
Months passed and, although my daughter’s sleep pattern improved, I was still exhausted. One day while showering, I felt a pea-sized lump in my left breast. I was breastfeeding and assumed it was a clogged milk duct that would go away on its own. A week later, it was still there. I tried pumping more frequently in hopes of draining it, but it didn’t help. I finally resorted to expressing it with my own mouth. (I know that sounds crazy, but an Internet search told me that breast pumps don’t work as well as the human mouth, so I gave it a shot!) The next day, I woke up with a horrible sore throat and thought for sure I had an infection. I made an appointment with my doctor who was quite amused by my story. We had a good laugh and he prescribed an antibiotic. He agreed that it was most likely a clogged or infected milk duct, but sent me for a mammogram and an ultrasound “just to be safe.”
Well, being “safe” saved my life!
There I was, getting my first mammogram. I was nervous but didn’t expect to hear bad news. The technician took some images and sent me back to the waiting room with all of the other women. But the other women were sent home, and I was asked to stay. At that point, I knew something was wrong but still had no idea how serious it was. I was asked to go into the mammogram room for a second time. With my skin pressed up against the cold machine, I started to cry. I went from that room to have an ultrasound, where the doctor asked if there was someone in the waiting room with me. My husband came in and the doctor explained to us that she wanted to perform a biopsy right away. I asked if she thought it was cancer and she replied that it looked very suspicious. She also stated that she had years of experience and, if the biopsy came back negative, she would want to do it again. That’s how sure she was it was cancer.
I immediately burst into tears. Cancer! WHAT? How could this be happening? All I could think of were my three children.
That day I was needle biopsied in three places: my left breast (where the lump was), an enlarged lymph node on my left side and in my right breast. Waiting for the results was torturous. I had no appetite and couldn’t sleep. I was terrified but tried to remain positive. I struggled to hold back tears as I watched my kids play. All I could think about was whether I would be around to watch them grow up.
On July 30th, 2015, my primary doctor called with the results. He said, “I have good and bad news for you kid. I will give you the good news first and this is the news that I want you to focus on.” The good news was that the biopsy of my right breast came back negative. The bad news was the biopsy on my left breast (where the lump was) was indeed cancer. In that moment, regardless of the so-called “good” news, all I heard was “YOU HAVE CANCER!” My world came crashing down. How could this be happening to me? How could I be 37 years old and have breast cancer? I have no family history, maintain a healthy lifestyle and am fairly active.
After the initial shock, I took my doctor’s advice and focused on the good news. My husband and I spent the entire night researching. We made appointments to see three different breast surgeons, all affiliated with different hospitals. To my surprise, each one of these surgeons had very different opinions about my case.
I was blessed to find a surgeon who made me feel safe from the start. She hugged me, looked me in the eyes and said, “Do not worry. I will take care of you, and you will live to watch your kids grow up to be adults!” Those were the exact words I needed to hear!
I was officially diagnosed with triple positive (ER+/PR+/HER2+) breast cancer in my left breast and DCIS in my right. I wasn’t staged yet, and I was an emotional mess. It was recommended that I have surgery, chemotherapy and Herceptin for a year. I was overwhelmed with fear. More than anything, I wanted to connect with young survivors who made it through and were living full, healthy lives. I also wanted to talk to other young mothers about how they told their children.
At this point, I still had not told my 12-year-old son Robert that I had breast cancer. That was by far the absolute hardest thing I have ever had to do! My husband and I sat him down at the dining room table and I said, “I am about to tell you something that might make you very scared, but you have to listen to me. I want you to know that I will be okay. I need you to trust me. Can you do that?” When he heard the words “breast cancer,” he burst into tears. When he finally caught his breath, he looked up at me and said, “Mom, are you going to die? Is cancer going to kill you?” I had to do my best to reassure him that I was not going to die, and that I would be fine.
At every turn in a cancer diagnosis, there are huge decisions to be made. What type of surgery? Chemotherapy before or after surgery? I chose to have a bilateral mastectomy and reconstruction with expanders on September 17, 2015 — 49 days after being diagnosed.
I started chemo on October 13th 2015. My oncologist told me that I would lose my hair by week six or seven. I was so unprepared for this. My hair has always been a big part of my identity. People knew me as “Jackie with the long hair.” I will never forget the feeling when I ran my fingers through my hair and looked down and saw a clump of it in my hand. It was the first time I was angry about having cancer.
I spent countless hours on the computer looking at wigs and at YouTube videos on how to tie a head wrap. I spent a lot of time and money trying to find a wig that fit properly and looked right. Meanwhile, my hair was falling out like crazy and was everywhere. I decided to shave my had on what, coincidentally, was my birthday. That night, friends were over and my husband shaved it all off. It was an extremely vulnerable but oddly liberating moment. However, I went to bed without covering my head and, when I woke up the next morning, my then 4-year old son Lennon was crying! He said “Mommy, why did you cut your hair? Why are you bald? I don’t want you to look like daddy!” We took him aside and explained that I was still the same person. My hair didn’t change who I was or how much I loved him. On a walk later that afternoon, Lennon said “Mommy, I love you with long hair, I love you with short hair and I love you with no hair at all. I love you exactly the way you are!”
In January of 2016, I started my “chemo-break.” It was during this break that I was introduced to 5 Under 40. I researched the foundation and was astounded. I watched the stories on www.5under40.org and was so inspired by each woman’s strength, beauty and courage. It was exactly what I was looking for — young women who were thriving. I was invited to attend 5 Under 40’s gala and was so excited to meet the women whose stories had given me hope. The night was so powerful and meaningful! Not only did I get to meet these inspiring women, but I also showed up bald. It was liberating to be in that environment completely bald and to feel so much love. I wasn’t worried about people looking at me, wondering why I had no hair. I felt supported for exactly who I was in that moment. On stage that night, I met 5 Under 40’s founder, Jennifer Finkelstein, for the first time. She told me that I looked amazing bald, but offered take me to a wig shop where she would buy me a great human hair wig. After all the issues I encountered with wigs, I said, “Heck yes!”
The following week, Jennifer picked me up at home to take me for a wig. I was blown away by her generosity and warmth! She took me to Bitz-n-Pieces and bought me a beautiful human hair wig that fit my head perfectly. For the first time in a very long time, I looked in the mirror and saw Jackie, not the bald sick version. It was a BIG moment!
Jen and the women of 5 Under 40 guided me and shared tips only a cancer patient would know. I don’t know what I would have done without them. These women are so brave, and I am honored to represent this amazing organization.
When life gives you lemons, make lemonade. While I wish I had never gotten cancer, I have tried to make the best of it. Cancer has taught me how to connect to my passion and do what brings me happiness. It has also given me renewed purpose. It fills my heart with such joy to make a difference in the lives of young women who are facing this devastating disease. To bring them hope and let them know they will be okay. I know, because I’ve been there.