Robert O’Neal

Sitting in the Emerson Hospital Emergency Room the night of May 26, 2022 I heard the words that would change my life – “it looks like you have cancer.”  The previous couple days had taken me away on a business trip when I started feeling really full, like I had eaten too much.  Up until that time, I was living life at full speed – spending time with family, working hard at a job I love, planning ahead for that next trip, watching the Boston Red Sox at Fenway Park, and puttering around the yard.

Now I was thrust into an unknown journey within the cancer world.  Thankfully, my wife Mariclare, my best friend and fiercest advocate, was beside me every step of the way as we navigated doctor appointments, CT scans, lab work, and other diagnostic tests which revealed I had stage IV appendix cancer with a PCI score of 39 out of 39.  Like the majority of other patients with this rare cancer, I didn’t know about it until it was very advanced.

On July 1, 2022 I was scheduled for CRS/HIPEC surgery at Massachusetts General Hospital in Boston.  Unfortunately, upon opening me up, the cancer had spread much further than realized, and my surgeon was not able to perform CRS/HIPEC. 

Although we were discouraged, at 60 years old, I felt there was much more living yet to be done.  So we searched for another option and found Dr. David Bartlett chair of the Allegheny Health Network Cancer Institute in Pittsburgh, PA.  Facebook groups can be a wonderful tool for something like this!  (See the “PMP Appendix Cancer Support Group” on Facebook for more information.) 

Dr. Bartlett reviewed my records and felt confident he could help me.  On December 30, 2022 I underwent about 12 hours of CRS/HIPEC surgery at West Penn Hospital in Pittsburgh.  Dr. Bartlett felt the surgery went as well as possible with many organs and the mucin removed.  I ended up with an external ostomy bag as part of the surgery.  This was reversed by Dr. Bartlett in a return trip to Pittsburgh six months later.  

Recovery has been slow and steady since my CRS/HIPEC surgery and ostomy reversal.  Initially I had no interest in food and eating was a painful chore.  I lost significant weight as part ofthis procedure (over 50 pounds).  It has been a gradual process but I’ve slowly been putting the weight back on and am up 20 pounds since my low point, and really enjoy eating again!  I am back to work full-time, walking 2-3 miles most every day, and enjoying time with my family.  I am currently on a program of CT scans every 3 months to monitor for recurrence of PMP.

On October 1, 2023 we held a cornhole tournament fundraiser for ACPMP that brought in over $45,000.  The huge turnout from our community and family supporting this event was overwhelming.  Hopefully this is another way we can make a small contribution to fund research in an effort to find early detection of this rare and deadly disease.