Robert’s Presence, 22 Years Later

Posted On Nov 14, 2022

Topic: Announcement, Hide on Homepage, Real Talk: Survivor, Patient & Family Stories, Your Source for Breaking News & Inspirational Stories
Robert’s Presence, 22 Years Later

by Merle Aaron

I never imagined I would be a widow at just 51. 

Robert and I met in 1976 and had a long-distance relationship. I lived in Trinidad, and he ran a motel in the picturesque summer resort town of Montauk, Long Island. He would spend winters in Trinidad when the motel was closed for the season. In 1990, we got married and I moved to Montauk, and together, we ran the motel and created a beautiful life. We made the perfect team—as a licensed electrician he took care of all of the motel maintenance while I managed reservations, and we both looked forward to the customers who returned summer after summer to spend their vacations on our property and who became our friends.  

In 2000, Robert started experiencing a strange, burning pain on the side of his back. He also suffered from indigestion and inexplicably lost weight. I insisted he see a doctor, who sent him for the CT scan that turned our lives upside down. The test revealed stage 4 pancreatic cancer. We were beyond shocked. Robert had no family history of pancreatic cancer, and he was otherwise in excellent health. In addition to owning and running the motel, he was an accomplished triathlete, surfer, and skier. 

Robert was stunned into silence by this news. My body froze and I was in compete denial because hearing his diagnosis was so unbearably painful for me. Luckily, a friend was with me and guided me out of Robert’s hospital room so he could rest. I went to the waiting room and started shivering from shock and a nurse had to wrap me in blankets. How could this be happening? 

Immediately, we committed to fighting this disease as a team. Robert was lucky to be the last participant admitted to a clinical trial for pancreatic cancer patients who hadn’t received any treatments yet. He was the only trial participant whose tumor had shrunk. Unfortunately, he had to leave the trial when he became hospitalized for pneumonia, so his oncologist prescribed the chemotherapy combination of gemcitabine and Abraxane once he recovered from pneumonia. He tolerated the therapy well and radically changed his diet to eliminate sugar and processed foods. In two months, his tumor markers went down considerably, and three months later he went into remission. We were both so grateful, and he thought he was cured. He regained the weight he had lost, and life returned to normal for more than a year.  

However, the cancer returned with a vengeance, this time in the liver, and he went back on chemotherapy. Throughout Robert’s illness, I never viewed caregiving as a burden, and I leaned heavily on faith and prayer. I never let him see me cry; I would sob in private but remained positive and optimistic around him. I drew strength from the family support I had, including my mom and Robert’s sister and brother-in-law. To help Robert cope, his sister bought him a dog named Lucy, and she was his constant companion, accompanying him every night for a walk on the beach.  

Despite trying numerous treatments, this time none of them worked, and Robert became very sick. When he was first diagnosed, doctors gave him four months to live; he fought the disease for two years before he passed away peacefully in 2002. He was just 60, and even though he told me repeatedly he had accomplished everything he wanted to in his life, I was devastated and heartbroken. Even Lucy felt this tremendous loss; she sat every night in the same spot, waiting for him to appear for their walks, and each time he didn’t, the pain felt like a fresh wound for both of us.  

To help cope with Robert’s illness, I joined an online forum for people impacted by pancreatic cancer, and the Lustgarten Foundation kept coming up. After Robert died, I needed to do something to spread disease awareness, and I came up with the perfect way that capitalized on one of his greatest passions: triathlons. Robert loved triathlons so much that he created his own annual race in June 1982, when triathlons were just an emerging sport. The Mighty Montauk Triathlon is the oldest triathlon on Long Island and consists of a 1-mile swim, a 20-mile bike ride and a 6.2-mile run across a scenic route in Montauk, Long Island. During race weekend, the motel is filled with triathletes and their families, many of whom return year after year, becoming a second family.  

I renamed the triathlon the RJA Memorial Mighty Montauk Triathlon in his honor, knowing that continuing this event he loved so much was the best way I could keep his memory alive. Starting in 2002, I began annually donating a portion of the proceeds to the Lustgarten Foundation. I’m honored to support an organization where 100% of all donations support research.  

In the 22 years since Robert was diagnosed, scientists have made substantial progress in pancreatic cancer research, and organizations like the Lustgarten Foundation are supporting the most innovative, noble work to transform pancreatic cancer into a curable disease. In fact, I have a friend who is an 8-year survivor, and that wouldn’t have been possible without the cutting-edge research Lustgarten funds.  

In memory of Robert and the thousands of others who have passed away from this devastating disease, and in honor of my friend and the growing group of survivors, I will continue organizing this triathlon every year. It’s the time when I feel Robert’s presence the most, like he’s still beside me, proud of my commitment to curing this disease and grateful to organizations like the Lustgarten Foundation for creating hope. 

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