Mom's Story

Mom said she didn't mind if I posted a few things about how we got here, to this diagnosis. What a strange trip it's been--can I say that? But maybe her story can help somebody else or a family member or caregiver dealing with similar things.

Mom had been saying for some time that she felt uncomfortable. She was buying bigger clothes even though she was eating well and exercising. Her doctors ran different tests and came up with different ideas . . . IBS? Celiac Disease? Ulcers? But no matter what the diagnosis or treatment, Mom still felt the same.

Earlier this summer, she was taking a walk with my Dad and felt a bad pain in her side. Dad convinced her to go to the ER because he thought it might be her appendix. Mom was there overnight while they performed a CT scan and some other tests. The doctors found a large tumor which they thought was on the ovary.

Within weeks, Mom had surgery at Hershey Medical Center to remove the tumor. During the surgery, the surgeon noticed that her abdomen was filled with a sort of fluid, which he could not explain. He didn't know what the fluid was, but he said he got out as much as he could. Because her appendix had been involved with the tumor growth, he had removed that as well. A pathology report would follow. Mom made a great recovery and was up and about and out of the hospital in just a few days!

When the pathology report came back, it didn't say much. The doctor could only say that the fluid appeared to be a low-grade malignancy. He didn't know what else to do, so he referred Mom to another doctor.

Thankfully for my brother's awesome Google search skills, he stumbled upon a disease with similar characteristics that were mentioned on the report: appendix involvement, fluid filling the abdomen, and general discomfort and bloating. "Pseudomyxoma peritonei" is apparently also a general term meaning "fluid in the abdomen." Once we found some specialists through http://www.pmpawareness.org/, we encouraged Mom to set up an appointment with them right away, so we could get to the bottom of this instead of waiting around for more opinions.

Two of the specialists were right here in Baltimore, where I live. Mom set up the appointments and in July, I went with my parents to see Dr. Sardi at Mercy and Dr. Esquivel at St. Agnes. Both doctors were incredible people. They were extremely helpful, answered all our questions, spent time with us, and provided much support for what they knew must be a stressful day. I think Mom had a hard time choosing between the two doctors but she eventually decided to be treated by Dr. Sardi. On October 28, she'll have what Dad called MOAS in his earlier post. MOAS stands for Mother Of All Surgeries, as other patients have termed it, but it is cytoreduction with heated intraperitoneal chemotherapy in technical terms. What makes it different from other surgeries is that it's very long, maybe 8-12 hours.

So here we are, and Mom is being unimaginably awesome and strong! I hope we are all being strong for her too. With Mom's positive attitude and her friends' and family's support, I think we're all ready to put this behind us and get moving on the recovery!