Words Like Locusts Flew From Her Fingers

Update on my Health

For those of you who’ve been following along…

I saw my surgeon (Dr. Saltzman) yesterday afternoon and have received the final pathology report. It’s relatively good news! Hurray!

Although I do definitely have pseudomyxoma peritonei, it is a “low grade” type — involving (as the report says) “dysplastic adenomatous mucinous neoplasm”. This may sound fairly scary, but it’s MUCH better than if it had said it was resulting from “adenocarcinoma”.

The thought is that this disease happened as an unfortunate and rare result of my surgery five years ago when I had a “mucinous villous adenoma” removed from my colon. Apparently some of the cells must have escaped into my abdomen and decided to go crazy. (Before you blame my first surgeon, consider that THOUSANDS of people have similar surgery every year without any problems whatsoever. I was just one of those rare people for whom the cells took off on their own.)

As proof of just how special I am, this is a really rare form of pseudomyxoma peritonei — which is ALREADY a really rare disease!

The pseudomyxoma peritonei is pretty much everywhere in my abdomen. It’s on most of my small intestine and, most bothersome right now, it’s also in the right side of my diaphragm. Consequently, I still have a little pain on my right side when I take a deep breath.

At this point, we’re probably going to take a “wait and see” approach. I have an appointment with a regular oncologist tomorrow morning, but my surgeon feels there’s not going to be any need for chemotherapy. (Largely because there is no chemo treatment that really does anything for this particular form of the disease.) The visit with the oncologist is mainly to get set up with someone local who can schedule my periodic followup testing and such. We’ll be doing regular “tumor marker” blood work every 3 or 6 months. Before I had surgery, my CEA (colon cancer) and CA-125 (ovarian cancer) tumor marker levels were both about five times the normal level. The expectation is that now that the worst of the mucinous goo has been removed from my abdomen, those results should be lower again. Maybe not normal, but lower. If they start rising, that will be a good early sign that a problem is developing.

Let me explain a little more: The thing with pseudomyxoma peritonei is that the mucous tends to especially collect on some of the organs. In women, it tends to collect on the ovaries. That’s why it looked like I might have ovarian cancer — because I had big tumors on my right ovary and on the remnant of my left ovary. When it collects on your organs, it can sort of harden and compress the organs — which results in a lot of inflammation — which can raise the levels on the tumor marker blood tests. Unfortunately, even though a lot of goo was removed, there’s still goo left inside of me and it will continue to grow. As it grows, it will eventually compress some of my organs. I may have bowel problems. Kidney. Liver. Who knows… it just depends on where it tends to collect and how fast it grows. My doctors will be keeping a close eye on things, though, and if it turns out I need more surgery, well… we’ll deal with that if and when it happens.

Besides having an oncology visit tomorrow, I’m also getting a referral to one of the few pseudomyxoma peritonei specialists in the area, Dr. Esquivel in Baltimore. He’ll give us a much better idea of what we can expect and what might be the best approach for managing this illness.

Well, that’s about it for now, I think! I’m healing really well from the surgery. (Surprisingly well, honestly.) We’re glad about the relatively good news! (It’s bad — but it’s not REALLY bad!) And we’re just kind of moving forward with whatever comes next. So… if anything big happens, we’ll let you know.