Deere, John

Deere, John, originally uploaded by jonnyups.

When I spoke with nurse at UCSD Medical Center, she said, "Essentially, you have PMP"

What is PMP? Here's what I've found out.

PMP is an abbreviation for a "syndrome" known as Pseudomyxoma Peritonei. Literally, this means false (pseudo) benign tumor with mucinous features (myxoma) of the abdomen (peritonei). PMP is sometimes known as "jelly belly".

Because PMP is such a rare condition, it is an "orphan" disease. This means that there is little knowledge of it in the medical community and little research is being done to find better treatments. This is why it is so important to promote awareness so that an appropriate standard of treatment is recognized and money is raised/made available for research. There is about 1 person with PMP for every 1,000,000 people in the U.S.

PMP is caused by low- to moderate- grade mucin-producing tumor cells that usually arise from the appendix. PMP is difficult to classify in to "low grade", moderate or higher-grade, due to its unpredictable behavior, both in its microscopic appearance and in the individual person. To most pathologist's PMP looks "low grade", but in PEOPLE it can act in a higher-grade fashion growing and spreading, and producing mucin/jelly more quickly than expected. This discrepancy between the microscopic/pathologic/scientific description/classification AND the actual "clinical" behavior of PMP in the patient, makes it much more difficult for the doctor to make accurate predictions, unlike breast cancers and colon cancers where the expected behavior of the tumor cells is more predictable. We generally like to think that PMP severity exists on a spectrum from low to moderate to high grade.. Despite pathology that looks low grade and a big "whew!" from the oncologist ("its just PMP") each person's version of PMP may defy what the doctor's and scientists and pathologist's THINK they know! PMP patients need experienced medical oncologists and surgical oncologists.

With all that said, I'm special. With almost 306,000,000 in America, I'm one of 306 people in the club. Sure, I'm rare, I'm special. But boy, do I feel so alone right now. Reading about this only scares me more. I can't wait to have my appointment on February 2nd. I need answers. I am sitting here in my room. Alone. Drinking 2 liters of laxatives. Preparing for my colonoscopy tomorrow. Not eating because I can't. And I just feel alone.

Leslie is the best. Hands down. You guys reading are the best. Your words comfort me beyond belief. I love you.

God, please heal me. God, please take my fears.


Anonymous said...

Wow... hang in there. We are praying for you! God be with you.

Brian & Julia

~gift~ said...

I want to tell you that God is keeping you safe, but you know that He's not safe, rather, He's good.
He's good.
I keep crying for you.
I love you.

Morgan Miller said...

I bet you never thought you would be some sort of medical precedent, eh?

Hang in there man.

Kristine said...

spinach - definitely spinach (though I've got nothing against basil). I'm still praying!

Mom said...

I love you Jon...very much.