My family and friends rallied around me as I started a team for PurpleStride. I named the team "Challenge Accepted," because I accepted my diagnosis and was determined to fight and win. Joining PurpleStride also helped me learn about PanCAN and all the services they offer patients and caregivers battling this difficult disease.
It also allowed me to meet other survivors and volunteers in Philadelphia – a new purple family that we love. And lastly, it created a platform for me to get involved and advocate for myself and others.
I remember blogging during my first chemotherapy session about my battle … sharing my experience and how I was feeling.
The Philadelphia Affiliate of PanCAN volunteers discovered my blog and had a care package waiting for me during my first chemo session.
The days after my first treatment were a blur, but when I started to recover I noticed thousands of dollars were donated to my team. I understand that everyone's health and battle is different. But I believe sharing my story with my community, family, friends and coworkers opened up a level of support that was simply overwhelming.
Family and friends all over the country were following my blog, waiting for updates, leaving encouraging comments and helping anyway that they could. Sharing my story and experience has created real fundraising power for PurpleStride.
No one can tell your story like you, and I encourage others to share your stories to rally support.
PurpleStride is one of my all-time favorite events because we celebrate survivors and remember the loved ones that we have lost. It is a day full of emotions, and I always leave feeling motivated.
My favorite moment at PurpleStride was in 2017, just two weeks after my Whipple procedure, as the event's survivor speaker. I began the year as a stage III inoperable patient and ended the year cancer free.
In a world filled with many differences, an event like PurpleStride breaks down the differences and creates a strong bond for a cause.
In addition to being a three-year survivor, I have lost two cousins and an uncle to this disease. I stride for my wife (Jen), kids (Nick and Samantha), family and those who we have lost to pancreatic cancer.
I stride because a 10% survival rate is not good enough. And I stride for the family and friends we've lost, so their voices will always be heard.
At age 44, I had too much life left to live and too much left to offer.
At the time, I had no idea PanCAN existed, nor did I know there was a PurpleStride happening in my own community. I found out about it more than ten years later.
I was like, 'What walk? What stride?' The moment I learned about the event, I registered to participate and also raised my hand to volunteer. I was so excited to get involved.
Because of my finance background, the Philadelphia Affiliate asked me to take on the fiscal aspects for PurpleStride. It was a perfect fit for me.
Then in August 2019 my affiliate invited me to serve as the Outreach Chair, expanding PanCAN's presence in our community.
In this role, I get an opportunity to tell people how underfunded and horrible this disease is. But, more importantly, I get to serve as an example that pancreatic cancer isn't a death sentence and encourage patients and their loved ones to never give up.
At a recent gathering with my affiliate members, we were talking and getting to know one another better and it hit me. I realized then that I now have another family of supporters. It was a powerful moment recognizing the many connections volunteering has brought me.
I wish I had known about PanCAN and resources like Patient Services when I was a patient. But I'm grateful to be involved now.
Volunteering has helped me to no longer be silent. It took me over 10 years to really sit up and do something about this.
It's a blessing. Not only because of me surviving this disease, but because of the lives I now get to impact.
As with many cases, I was not initially a candidate for the Whipple procedure. I underwent four months of chemotherapy, followed by six weeks of daily radiation and chemo, both of which helped reduce my tumor to the point where my surgeon was willing to attempt the Whipple procedure.
Due to the complex location of my tumor, the only way to definitively know if a Whipple was possible was to try. On October 31, 2016, I underwent a successful eight-plus hour Whipple procedure, and a week later, I was given the great news that all margins were clear and all lymph nodes were negative for cancer! I started adjunct chemotherapy in January 2017 and have managed to find the good in each day.
Unfortunately, soon after I was considered "no evidence of disease," the cancer returned at my surgical site and I was now considered stage IV. Since starting chemo again in mid-2017, I have been treating consecutively with only two short chemo breaks.
In early 2019, we learned that the chemo was no longer working. I underwent more testing and procedures, and it was confirmed that the cancer had spread to my lungs and pleural lining. Along the journey, I also learned that I have numerous bone metastasis.
After a failed attempt at using a different chemo, I started a clinical trial in June 2019. The trial has me at the hospital twice per week for infusions, with markers and scans frequently to track progress. So far, the trial has kept my disease stable for nine months, and I anticipate staying this way for many more years.
My first PurpleStride walk was in May 2017 in Rhode Island. It was a beautiful sunny day, and I attended by myself to see what it was like. I was overwhelmed to see how many people were there, smiling, supporting, cheering on survivors, and remembering those we lost.
It was a sea of purple, a color I have learned to love.
I have participated in five PurpleStride walks to date – three in Rhode Island, one in Boston, and one in Austin, Texas. My first walk was by myself, and my last walk was with a team of 33, comprised of family, friends, friends of family, friends of friends and coworkers.
Each year, our team continues to grow.
As Team Captain of Team #Junestrong and a pancreatic cancer survivor, it is heartwarming to look at my team and know how many people are willing to give their time and raise money for PanCAN. Each event gives me much-needed rejuvenation and fills my emotional tank, giving me strength to continue to fight.
Many people don't realize the lack of funds and support for pancreatic cancer compared with other cancers and how PurpleStride is an essential part of fundraising.
PanCAN's PurpleStride allows patients and families to have access to endless support through Patient Central with up-to-date information on treatment options, clinical trial info and countless resources about targeted treatment and steps to take to have the best chance of beating the odds.
PurpleStride also allows money to be raised for much-needed research to better understand this disease and how to attack it.
When my journey began in 2016, my children sprang into action and through PanCAN and their resources, have been able to help me manage the crazy web that is pancreatic cancer.
In the four years that I have been battling, we have seen so many improvements in treatment, options for clinical trials, and fundraising. Four years ago, individualized treatment and Know Your Tumor® didn't exist. We had to push and figure out many things on our own that are now standard.
Without these improvements, it's unlikely I would be here today to share my story.
My advice to all other warriors is to stay educated, stay positive and never give up. Surround yourself with people who make you better, help you find the best treatment options whether standard or natural, and encourage you to live in the moment and enjoy every day!
With the bad news came some good news: It was believed the tumor was stage II and a Whipple procedure could be attempted. As preparations were underway to begin the Whipple, it was discovered that a projection from the tumor was touching the portal vein with likely vascular wall invasion.
A resection of the vein was done and after a recuperation period, chemotherapy with Gemcitabine commenced. Within five months of having the Whipple and just three months on Gemcitabine, a CT scan revealed metastatic disease in the liver. Folfirinox and genetic testing led to a clinical trial with a successful outcome.
Throughout my life, I've had a penchant for helping others. Determined not to let pancreatic cancer negatively impact this, I began to look for ways to turn a negative experience into a positive one and help others who suddenly found themselves in a similar predicament.
I became aware of the Pancreatic Cancer Action Network (PanCAN) while undergoing second-line chemotherapy. My oncologist informed me of an event dealing with scientific and clinical advances conducted by the New York City Affiliate of PanCAN. Meeting other survivors, caregivers, scientists and PanCAN staff was the catalyst that inspired me to give back by helping others.
I attended my first Advocacy Day event (now PanCAN Advocacy Summit) in 2017. With other survivors and caregivers, we told our personal stories to members of Congress about how pancreatic cancer had affected our lives.
In 2018, I attended my first PurpleStride in New Jersey. Still having some neuropathy in my feet from chemo, I stayed in the Survivor Tent. I met patients and survivors, sharing my story of how I was able to remain emotionally, mentally and physically strong. Health tips and inspiring stories were shared among the attendees as well.
The next year, 2019, I attended PurpleStride events in both New Jersey and New York City, thanking participants for their selfless acts as caregivers, survivors for mentoring others, and those helping to raise money for patient and caregiver support programs provided free of charge through PanCAN's Patient Central.
When the opportunity of taking on the role of volunteer Outreach Chair for the New Jersey Affiliate was offered, I enthusiastically answered the call. The position was a natural fit.
I had a career in the life sciences and doing biomedical research. I liked explaining scientific concepts in easy-to-understand terms, so this position allowed me to conduct awareness programs for the general public.
When a PanCan volunteer I met at a support group listened to me talk about my diagnosis, treatment, and recovery, that person suggested I contact the PanCAN Survivor & Caregiver Network to serve as a mentor. I have also met newly diagnosed patients, offering support as a mentor and navigator, and put them in touch with PanCAN's Patient Central.
In 2020, I was invited to the World Pancreas Forum held in Bern, Switzerland, and was asked to deliver the Word of Welcome to 300 attendees primarily eminent surgeons as well as oncologists and scientists engaged in battling pancreatic cancer.
April will be the first of two PurpleStride walks; June will find me again at PanCAN Advocacy Summit in Washington, D.C., and as Outreach Chair, I will be busy partnering with hospitals and healthcare networks to educate the public on the importance of symptoms and early detection.
I find my new mission in life of helping others extremely rewarding and satisfying.
I have always been healthy, exercised and haven't taken any medications. My doctor was wonderful and sent me for an ultrasound the next day. From there I had a CT scan, and then a laparoscopic biopsy.
My team consists of my family and some very close friends. June 2020 will be my fourth year participating in PurpleStride. I was the top team fundraiser for two years, and the top individual fundraiser for the last three years.
I enjoy giving back to PanCAN for all that I have been given. I am very blessed. I have told many of my family, friends and clients about my story, and they have been very generous when I ask for a donation.