Friday, May 27, 2011

Benign, but not really.

That is the partial title of the article I found while searching medical journals for information about my condition.  As a student and faculty member at IU, I have  access to a myriad of professional online journals.  In the search box, I clicked on title, and entered the terms "pseudomyxoma peritonei" and, ultimately, "low-grade pseudomyxoma."

The reason I even knew what to search for was because I had heard from my soon-to-be oncologist, Dr. Wiebke.  He's in Vietnam with medical students, but was kind enough to answer the email I sent him when I learned I might need to see him.  I told him about my path report, and he suspects I have pseduomyxoma peritonei caused by a low-grade pseudomyxoma.

In simple terms, it's a benign form of appendix (usually) cancer.  It's considered to be a "low-grade" cancer despite its lack of malignant features.  As the title suggests, it's benign only in that it doesn't spread through the bloodstream and spread to far-away organs like the brain.  As I mentioned in a previous post, it causes havoc by pressing on internal organs within the abdomen.  The implants (of which I have five that we know) can grow so large that they actually cause the other organs to rupture.

But that only happens without proper treatment.  And, though it's taken me an absurdly long time to get it, I'll be in the hands of an expert.  What is concerning me is the actual treatment.  From what I've read, the curative treatment is something caused a peritonectomy--basically slicing you open and peeling the inside layer of your abdominal cavity away.  This ensures that all the implants (even those that are invisible) are removed.  The other abdominal structures--spleen, pancreas, liver, diaphragm, bowel, etc. must also be thoroughly "cleansed" of any implants.  Intra-abdominal chemotherapy usually follows the surgery.

I don't know that I'll have to have a peritonectomy, but I'm about 99% sure I'm going to have some kind of surgery this summer.  Dr. Wiebke has to see how everything looks. I'm guessing he'll do that, and then come up with a course of action.  All I know is that it's something I'll have to deal with forever, it's extraordinarily rare, and I am extremely lucky to be in such close proximity to Dr. Wiebke.

So, that's what we're dealing with.  Obviously, I'm not thrilled about it (especially after reading some of those articles--I really shouldn't do that).  But I'm counting my blessings.  Not the least among them--running just may have saved my life.  It is exceedingly rare to catch this kind of cancer (I hate that word, but that's technically what it is) in the early stages.  People usually don't have major symptoms until the implants have gotten so big that they press on their organs.  People usually have low levels of achy-type pain that they (and their doctors) attribute to musculo-skeletal origins.  People don't get really concerned until they start experiencing that very sharp pain that radiates around the abdomen and into the shoulders.

That pain that I know all too well--the pain that would start a half mile into my runs and not have mercy on me until I stopped, be that 10, 15, or 20 miles later.  The pain required TWO TENS units, both set to full power, to make my runs tolerable.  I sought medical treatment because my symptoms were so severe.  They were so noticeable because I was running.  I'm glad I didn't stop.   That I didn't throw my hands up and say:  "Fine.  They're right.  It's muscular and I need rest from running."  To use a Bedford term:  Hogwash.  I knew they were wrong.  But I was becoming worn down and exhausted trying to fight them.  Talk about a test of endurance.  I'm immensely thankful I lasted.

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