Janet's story

I’m Not Going Anywhere


In May 2018, just after my 58th birthday, I started feeling light-headed during my CrossFit workouts, which I had been doing for more than seven years. It happened again while I was at work as a New York City teacher. Despite undergoing multiple tests showing normal results, I began experiencing sharp pains in my stomach, reminiscent of the ulcer I developed 20 years ago when my son was diagnosed with sarcoma. (He’s a two-decade cancer survivor!)

After a routine colonoscopy and an endoscopy, which I was sure would reveal another ulcer, I learned the devastating, unthinkable cause of my symptoms: Stage IV pancreatic cancer. The tumor had already invaded my duodenum, which is the first part of the small intestine that connects to the stomach. My initial thought was that no one survives pancreatic cancer and I was going to die.

That first month after the diagnosis I was totally out of my mind with fright, shock and anxiety, giving away many of my favorite possessions to friends and family because I feared the worst. I shook uncontrollably and cried every day and tried to cope by praying for mercy. Prior to learning I had pancreatic cancer, I, like many other people, wasn’t exactly sure where the pancreas was even located, or what its purpose and function were.

I couldn’t fathom what was happening. How could someone like me, who exercised consistently, spent a lot of time hiking and doing other outdoor activities, followed a healthy diet, got plenty of rest and had no family history of pancreatic cancer, be diagnosed with this disease, which has the lowest five-year survival rate of any major cancer?

Survival Instincts

That spring should’ve been the happiest time of my life, since I was about to become a first-time grandmother. After many challenging years as a single mother raising my three children, I was now enjoying my time as an “empty nester” and I was looking forward to retiring soon. Instead of preparing for my grandchild’s arrival, I was confronted with the heartbreaking fear in the eyes of my loved ones. The pain my diagnosis caused my children, parents (both of whom are nearing 90), siblings and friends was unbearable to see.

I was absolutely rattled.

About a month after my diagnosis, while I was preparing for my first surgery, the fighter and survival instinct kicked in. I couldn’t let anything, not even a life-shattering pancreatic cancer diagnosis, get in the way of meeting my grandchild. My thoughts shifted to “I’m not going anywhere!” I knew I had to channel all of my energy and determination into fighting pancreatic cancer. I wanted to continue to be the rock for my children and welcome my first grandchild into the world.

The initial treatment plan focused on my undergoing a Whipple surgery, which I learned was a complex operation with a long, brutal recovery. During the surgery in June, my surgeon discovered the pancreatic cancer had also spread to my abdomen. As a result, he was unable to complete the full Whipple. The news was devastating to all of us. I spent a week in the hospital, then at home to heal for eight more weeks to get stronger for the next phase of my treatment.

A New Plan

Since the Whipple couldn’t be completed as we had planned, the new strategy was for me to start a 5FU chemotherapy regimen in hopes of shrinking the tumor so I could return to surgery. A port was placed in my chest to pump the chemotherapy around the clock for several days at a time. The routine alternated one week on treatment and one week off. This regimen was followed by a treatment to help replenish the white blood cells depleted by chemotherapy—a process that was completely debilitating and worse than the chemotherapy itself.

For the first six months following my diagnosis, every day I woke up I was hoping this was just a nightmare. As I moved in my bed, I would feel the tug of the port in my chest attached to the chemotherapy bag, and my heart would sink as I was reminded of the harsh reality of what my life had become. In my waking hours, I refused to own the disease; I never referred to it as my cancer.

After three rounds of the 5FU regimen, the tumor markers began to steadily decline. I continued treatment with 11 grueling rounds of chemotherapy. My oncologist made it clear that it was rare to make it back to surgery, but we were going to hope for the best. Fortunately, I was one of a very lucky few who qualified to return to surgery, which can provide the best chance for long-term survival.

Again I chose to focus mentally on killing the “monster,” as I called the disease, and on meeting my grandchild. In January 2019, I underwent a successful Whipple procedure. This second chance at life powered my recuperation, and each day I became slightly stronger. My prayers for a recovery were answered!

I don’t care about the damage that accompanied the aggressive treatment or the side effects including neuropathy and what we call “chemo brain.”

Because I’m alive. And that’s all that matters!

A Grateful Heart

I became a grandmother to my first grandchild, Jake Matthew, and most recently to his brother, Luke John. I now look healthy and have thankfully gained back the 20-plus pounds I lost during treatment. I reclaimed my independence, and eight months after surgery I returned to work full time as a teacher.

CrossFit Gotham has been critical in helping me get stronger both physically and mentally, and in helping me cope with the “scanxiety” I, like many survivors, feel leading up to our next scans. I’m beyond grateful my latest scan showed no evidence of disease (NED).

There are no words to fully describe the gratitude I have for my family, friends and the teams of doctors and other medical professionals who have taken such great care of me and nurtured me throughout this journey.

This cancer experience has taught me many things including to never lose sight of what a blessing it is for me to have survived this disease. I will forever be grateful I didn’t go anywhere, that I am here for my beautiful family and grandchildren and am ready to experience all of life’s milestones. Surviving has not only made me appreciate my family and friends even more and strengthened our relationships, but it also has inspired my friends and family members to savor every moment of their own lives and the lives of their loved ones.

Moreover, having had cancer has taught me no one is guaranteed their tomorrow. My advice is to continue to make the best of what you have because it could always be worse, even after a diagnosis as devastating as pancreatic cancer.

I’m well aware that many patients’ pancreatic cancer journeys don’t evolve as mine has. I know there are too many tragic endings for pancreatic cancer patients and families. To ensure more patients become survivors like me, I support the Lustgarten Foundation’s mission to find a cure. I donated to the Foundation’s recent New York Virtual Pancreatic Cancer Research Walk because I believe funding research is the best way we can stop this disease from ravaging families and destroying lives.

There’s nothing more priceless than giving people more time to live, and to have a good quality of life. As a Stage IV pancreatic cancer patient, I experienced that firsthand. Now, I have a duty and a calling to share my message of hope with other patients and families and to let them know second chances for pancreatic cancer surgery are possible, and our community of survivors is growing. I’m living proof that you should NEVER EVER GIVE UP!

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