Words Like Locusts Flew From Her Fingers

Pythons vs Boa Constrictors

For people who haven’t spent a lot of time reading up on Pseudomyxoma Peritonei, which is pretty much anyone who doesn’t actually have it, it can be difficult to understand how this illness works and why it’s considered a cancer.

The first thing you need to know is that the defining characteristic of PMP is the presence throughout the abdomen and pelvis of large numbers of mucus-producing cells. These cells produce mucus in such large quantities that the “goo” — which has the appearance and consistency of apple jelly — can be coating most of the organs in the abdomen and pelvis. This is not at all a normal state of affairs. Sometimes the goo will harden up a bit and stick to the organs. Sometimes it “glues” organs to the abdominal wall or to one another, or — in my own body — it will glue loops of the small intestine to one another. None of this is good. The most insidious thing the goo does is that over time it will compress the organs to a point where they can no longer function properly. This is very very bad.

Unlike most other cancers, though, PMP does not (usually) metastasize to other parts of the body through the bloodstream or lymph system. Occasionally (rarely, thank goodness), it breaches the diaphragm and finds its way into the chest. As you might imagine, having goo surrounding your lungs is bad in every way. I haven’t read about it getting as far up as surrounding the heart, but I imagine that would kill a person pretty quickly.

Anyway…

It’s a weird sort of cancer because it doesn’t act like other cancers.

If you think of cancer as being like a snake, here’s a comparison that might help. Most cancers are like pythons. The cancer cells just go on a rampage, chasing down, biting, killing, and eating otherwise healthy cells. PMP, though, is more like a boa constrictor. It takes its time and gradually squeezes the life out of healthy cells.

Either way, at the end of the day, bad cells have killed good cells. That’s why it’s a cancer.

A New Look

I decided the look of the blog was kinda depressing, so I borrowed some graphics that I’d purchased for my Amateur Flutist Network page (that NOBODY ever visits) and am using them here. Much cheerier, no? I figure if I’m going to write about cancer, I might as well do it on a cheery background.

Minnesota’s Anti-Gay Marriage Amendment

The moment that most won’t forget is when Rep. John Kriesel, R-Cottage Grove, rose late Saturday night to speak against the marriage amendment.

Kriesel, whose legs were badly mangled in Iraq, was described by Zellers at the beginning of this session as “a rock star” of the Republican freshman class. And now, here he was, speaking out passionately against a key Republican action.

“If this was five or six years ago,” Kriesel said as he began his talk, “I probably would have voted ‘yes’ without really thinking about it.”

Then, Kriesel told a silent House about suffering his wounds, laying in the dirt, legs mangled, thinking of his wife and kids and doubting that he’d ever see them again.

The thoughts of the people he loved, he said, made him fight for life.

“As bad as that day sucked,” he said, “it’s changed my life in good ways. What would I do without my wife?”

He talked of how it’s a hard world and “that happiness is so hard to find.” Why, he wondered, would legislators vote for something that would deny people who love each other the chance to marry?

“This amendment doesn’t represent what I went to fight for,” he said.

Before he spoke, Kriesel had made sure each legislator had received an 8 ½-by-11-inch copy of a photo of Army Spc. Andrew Wilfahrt in combat gear. The Minnesota man was killed in Afghanistan during the winter. He was gay.

Kriesel asked his colleagues to look at the picture and think about the young man’s death.

“Good enough to give his life for his country, but not good enough to marry the person he loved?” Kriesel asked.

via MinnPost – Marriage amendment is legislative session’s legacy, despite all the rhetoric about the budget and spending.

John Kriesel is a hero in so many ways. Whenever I’m tempted to think all Republicans are idiots, I’m going to come back here and read about this brave man who spoke up for what’s right and just, even in the face of immense political pressure to do otherwise.

This Is What I’m Feeling

Its funny, all your life you just carry on happily doing the day to day things comfortable in the knowledge that you are well and making plans for the future. Holidays,family days out,birthdays and Christmas. Subconsciously looking into the future with a picture of what you want to do and places you want to go.

I don’t have that, I used to. I don’t anymore. Just a black,blank space where the future used to be. I cant get it back until the operation is done and I know I have pulled through and hopefully PMP free.

via My Story-My Battle with Pseudomyxoma Peritonei (PMP).

Tumor Markers

Test                                             CEA                             CA 125
Ref Range                                 < 4.6                            < 35
5/17/2006                                4.7
7/5/2006                                  2.7
11/17/2006                              6.4
3/14/2011                                24.0                              153.00
5/12/2011                                16.2                               94.17

Hm… So, my tumor markers have gone down since my surgery — but not as far down as we’d hoped. I’m supposing we’ll want to do these tests again in a couple of months to see what’s happening.

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.

Is The World Safer?

Certainly, bin Laden had it coming. I’m not ashamed to write that I’m glad he’s dead — but it’s got nothing to do with the world being safer. (I don’t know whether that’s even true.) Rather, it’s got everything to do with vengeance.

Obama also said “justice has been served”, but I don’t know if I agree with that. I don’t know what justice would even look like in this case. How do you justly punish someone who was responsible for the deaths of thousands of people? Torture him to a point of near death and then revive him over and over and over? Is that justice?

Or would that make us just as monstrous as the person we were punishing?

Obama: ‘The world is safer . . . becau – The Washington Post.

Atheists

A growing body of social science research reveals that atheists, and non-religious people in general, are far from the unsavory beings many assume them to be. On basic questions of morality and human decency — issues such as governmental use of torture, the death penalty, punitive hitting of children, racism, sexism, homophobia, anti-Semitism, environmental degradation or human rights — the irreligious tend to be more ethical than their religious peers, particularly compared with those who describe themselves as very religious.

via Why do Americans still dislike atheists? – The Washington Post.

I’ve decided that posts about this topic (people who don’t believe in gods of any sort) will be categorized as being about “humanism” instead of about “atheism”. This particular article from the Post — while it does inspire a sort of “neener, neener, neeener!” response in me (“I told you atheists are more ethical than religious people!”) — is really most interesting because of the many comments made on it by Post readers.