MA Man Battling Rare Disease Plans Cornhole Event To Raise Awareness

WESTFORD, MA — For nearly a year and a half, longtime Westford resident Rob O’Neal has battled a "two in a million" form of appendix cancer that even stumped doctors at Mass General. Now, he's planning a cornhole tournament in his hometown to raise awareness for the disease, which many people don't even know exists.

O'Neal was a healthy and active 60-year-old who enjoyed hiking 4,000-foot mountains and spending time with his family when he first felt a pain in his abdomen while on a business trip in Albany, New York, around Memorial Day last year.

"Out of the blue, I just got this sensation, this pressure in my abdomen. And the way I relay it to people is just imagine Thanksgiving dinner where you’ve eaten too much. That's how I felt all of a sudden," O'Neal explained to Patch in an interview Wednesday. "But then after about 24 to 48 hours, nothing changed. So I called my doctor and she said, 'you'd better go to the ER and have some scans.'"

O'Neal went to Emerson Hospital, where an emergency room doctor took a CAT scan and gave him the news that would turn his life upside down.

"[My wife and I] were just sitting in a room waiting for [the scans] to come back. And she said, 'I’m sorry to have to tell you this, but it's very possible that you may have cancer,'" O'Neal said. "Cancer was not on my mind at all. So to hear those words, and we were just sitting there in total shock. Like, 'no, this, this can't be, how could that be?'"

In addition to appendix cancer, O'Neal was diagnosed with an extremely rare disease called Pseudomyxoma Peritonei, or PMP. Doctors told O'Neal that mucin insidiously seeped from his appendix throughout his abdomen, coating many other organs — most likely for many years.

O'Neal was admitted to Mass General in July 2022 to have a 13-hour operation, but his surgeon only realized after he began operating that O'Neal's disease was too advanced to proceed as planned.

"My surgeon opened me up, saw what was inside, and he ended up closing me up. He couldn't do the surgery," O'Neal said. "He didn't feel comfortable."

O'Neal was crushed as he was forced to confront the news that even one of the most advanced hospitals in the world could not help him.

"[My doctor] said you should get your affairs in order … he probably thought I had a year or two to live," O'Neal said. "But my alternative was to just give up. Or [my wife and I] could fight; we could try to find another specialist who would be willing to look at my case."

O'Neal's wife Mariclare immediately started scouring social media channels and the internet for any news about PMP. Along with the support of O'Neal's oncologist, she eventually found a surgeon at the Allegheny Health Network in Pittsburgh who specializes in PMP cases — Dr. David Bartlett. He agreed to take on O'Neal's case and perform the PMP surgery known as MOAS, or Mother of All Surgeries.

The couple drove from Westford to Pittsburgh over the Christmas and New Year holidays. On Dec. 30, after a 12-hour surgery where dozens of tumors and multiple organs were removed, and high-temperature chemotherapy was put into O'Neal's abdomen, Bartlett told him "I just reset your clock."

O'Neal described his whirlwind of a year as taking a "group effort" to help him stay positive, crediting his friends, family, wife, and children for keeping his spirits up. Now, he feels like he's "got a lot more living to do."

"It’s been a long, long road of recovery. But I'm not gonna dwell," O'Neal said. "I have some crappy days, of course. But I'm not gonna go to the alternative rabbit hole, which is just giving up, rolling over, and, saying 'that’s it.' So I'm gonna fight."

To help raise money for appendix cancer and PMP research, O'Neal has teamed up with the Appendix Cancer Pseudomyxoma Peritonei Research Foundation — the only nonprofit organization completely dedicated to funding research for the diseases — to hold a cornhole tournament at Abbot Elementary School on Oct. 1.

"We want to bring everyone together for a fun afternoon of cornhole, raffles, and silent auctions," O'Neal said. "But awareness is really the thing we're trying to get out of this ... [appendix cancer] is not like breast cancer or colon cancer which have these very well-known foundations."

The next hurdle is that even with increased awareness, it is difficult for patients to recognize in themselves a disease that has no symptoms until it might be too late.

"By the time you recognize it, it has been going on for a long, long time and it's very advanced," O'Neal said. "And unfortunately, a lot of people don't make it."

That's where research and fundraising could make all the difference.

"For breast cancer, you have a mammogram as sort of a diagnostic screening tool for people to perhaps catch something early on, right? None of that exists right now for appendix cancer," O'Neal said. "[I’ve been] talking to my surgeon and some other people that we've met in this field, and we would love to eventually have some kind of a screening tool available."

Dave Grip, a close friend of O'Neal's said that O'Neal's attitude toward the ordeal — of determination and a desire to help others from suffering — does not come as a surprise.

"Rob is one of those selfless people who always steps up to volunteer and contribute without calling attention to himself; over the years taking leadership roles in coaching, church, scouts, and in the community," Grip told Patch. "Over the last year plus he has been through hell. It's frustrating to see him and his wife Mariclare have to go through this and try to figure out how to navigate a journey that not many people have been on."

Fortunately, O'Neal and his family have plenty of reason to believe that better days are ahead.

"He, Mariclare, and their medical team have found a path forward that is giving him hope for the future when only months ago the prognosis was very dire," Grip said. "The way that he and Mariclare have handled this has been an inspiration for all of us."

One of O'Neal's first nights out several months after the successful Mother of All Surgeries was a Springsteen concert in Boston, Grip explained. The show opened with the song "No Surrender."

"That was a perfect metaphor for how Rob has fought this terrible disease," Grip said.

The Kicking Appendix Cancer in the Cornhole Tournament is set to begin at 12 p.m. on Oct. 1, with an 11 a.m. player check-in.

For more information and to donate, visit the ACPMP's website.