When Barry Reiter was diagnosed with Lymphoma in 2011, his doctor performed a tricky and frightening surgery to remove tumors from behind Barry’s right eye. In 2015, when Barry learned he had prostate cancer, he was very distressed to learn he would need to endure more cancer treatments. Still, he considered it more of a ‘setback’ than a life-threatening illness. Later that year, when Barry was diagnosed with pancreatic cancer, he feared it was a death sentence. In fact, his doctor told him to get his affairs in order. Despite the odds, Barry recently celebrated 27 months of survival. Since his initial diagnosis, Barry has done all he can to help others affected by the disease…he even started his own support group on Facebook!
Barry Reiter: A Crazy Story
Barry describes his initial diagnosis as ‘a crazy story’, and in fact, it is a story unlike one I have ever heard before. In April 2015, he went to the doctor for his annual physical. His PSA (Prostate Specific Antigen) levels were high, indicating he could possibly have prostate cancer. After taking an antibiotic for some time, his blood test was repeated. Unfortunately, his PSA level continued to climb. In June, 2015, a urologist confirmed Barry had prostate cancer through a biopsy.
An accidental click of a mouse entirely changed things dramatically. When Barry went in for a pre-surgical MRI, someone clicked ‘abdominal’ instead of ‘pelvic’ on the test order. In retrospect, he is incredible lucky this error occurred as he may never have learned he had a cancerous tumor in his pancreas. Barry, who was asymptomatic, learned he had pancreatic cancer on July 1, 2015.
Before treatment could begin, Barry had a test called an endoscopic ultrasound, which allows the doctor to get a better look at the tumor. Though his doctor believed the cancer had not spread far, Barry was determined to have ‘locally advanced’ cancer. His tumor was wrapped around the portal vein, an important blood vessel which runs through the pancreas. Doctors needed to shrink the tumor before attempting to remove it.
Barry endured 11 rounds of a tough chemotherapy regimen known as FOLFIRINOX. While follow-up testing showed his tumor shrank by about a third of its previous size, doctors still were unsure as to whether or not they could remove the tumor. The tumor was still touching the portal vein, and Barry could bleed to death.
The surgeon Barry consulted at Memorial Sloan Kettering believed he could remove the tumor, but he brought in a vascular surgeon to resect the portal vein. On June 19, 2016, Barry had a successful distal pancreatectomy. The tail of his pancreas was removed, along with several lymph nodes and his spleen. While the surgery was successful, the recovery was not easy or simple.
Following the six-hour procedure, Barry suffered several complications. First he developed pneumonia in both lungs. Then, he experienced internal bleeding. He endured more exploratory surgery so doctors could find the source of the bleeding. It turns out, his duodenum had ruptured, causing Barry to lose six pints of blood.
The Good and the Bad
Fortunately, Barry’s post-surgical pathology report brought good news. His lymph nodes contained no cancerous cells. Since his surgery, his tumor markers have remained in the normal range. However, the road after a pancreatic cancer diagnosis is never without bumps. For several months now, his oncologist has been keeping an eye on a lymph node that is growing.
In addition, Barry has suffered a number of life-altering post-chemo side effects. He says, “I have bad neuropathy. I walk with a cane now and have chemo brain and fatigue. I have gone through a forced retirement, and I hold my breath in the week between my scans and when I meet with my oncologist.”
The Impact Pancreatic Cancer has had on Barry Reiter
Barry married his wife, Hildee, in 2009. His son, Joshua, is a pharmacist, and his daughter, Bailey, is currently a college student. Barry was the Chief Operating Officer for a specialty pharmacy when he was diagnosed with pancreatic cancer. He took time off from his job while he went through chemotherapy and surgery.
About six months after his treatment was complete, he tried to return to work. The cancer and its treatment had taken a toll on him, however. He medically retired from his job. Barry explains, “My short-term memory loss was definitely hurting my ability to do my job and to multitask. I found myself having episodes of fatigue midday which were almost a complete shutdown of my mind and body. I could not perform my job at the level I was used to, and that was the end of my work.”
Life After Pancreatic Cancer
Having to retire has impacted Barry’s life in a number of ways. He and Hildee downsized from a three-bedroom home to a one-bedroom apartment. His physical complications, the decrease in his earning capacity and the fear of cancer returning have all created a lot of stress for Barry. He says, “The doctors won’t ever say to you that you are cured from pancreatic cancer.” Knowing the statistics and recurrence rates, patients often worry it is not a matter of if their cancer will return, but when.
If anything remotely unusual shows up on a scan, pancreatic cancer patients and their families often experience intense fear or even panic. Barry believes learning to manage emotions is an integral part of dealing with pancreatic cancer. Recognizing the need for both a healthy body and a healthy mind, Barry says, ‘It is hard not to live in fear and not to be angry. I need to work on those feelings on a daily basis because having all of that fear and stress is not good for us.”
Pancreatic Cancer NEGU
Looking for a support system and not finding one that truly fulfilled his needs, Barry started his own. His Facebook group ‘Pancreatic Cancer: NEGU’ (Never, Ever Give Up) now has over 2,000 members. His group supports those currently fighting the disease, longer-term survivors, caregivers and families members of those diagnosed with pancreatic cancer. “We support people’s milestones and yet we also support those whose family members are nearing the end and those who are grieving a loss. As long as there is a need for support, I want to provide a forum for people,” Barry says. To find Barry’s pancreatic cancer Facebook page, click HERE
He continues, “This disease is horribly evil when it comes back. The forming of this support group has been my own form of self-therapy. It gives me a lot of joy to provide personal assistance to someone.”
Since his diagnosis with pancreatic cancer, Barry has immersed himself in the world of PC education and advocacy. As part of his effort to ‘give back’ as a survivor, he has supported a number of cancer charities, including Project Purple. “One of the things Project Purple does that no other charity does is provide patient services. It helps individuals and families with financial needs and is a wonderful organization.”
Project Purple funds pancreatic cancer research and provides financial aid to patients in need. Click HERE to find out how you can get involved with Project Purple!