Inappropriate Humor

Okay, now some things from my HIPEC night (see 2 posts before this one) are coming back to me.

I remember R singing "I'm PMP! I'm dynamite! PMP! And I'll win the fight!" to the tune of AC/DC's "TNT" all night. You can watch it here (the TNT version, not the PMP version). You have to watch it until at least a minute in, to the chorus. Then sing along....


Oy!

Also, I have a better recollection of the cab ride. I told R that I have a brand new, all purpose, unbeatable excuse for everything I do wrong, from now on. I told him, "Go ahead, complain about something I did." He said something like "You ate the last onion ring, jerk." At which point I yelled back, "F*&K YOU, I HAVE CANCER!" And we both laughed hysterically. Cab driver looked uncomfortable.

I apologize for offending anyone. But see my excuse, above.

More Doors at M.D. Anderson

Friday, January 8, 2010, is the scheduled date of my cytoreduction and HIPEC procedure at M.D. Anderson Cancer Center in Houston, Texas. An update--M.D. Anderson "re-diagnosed" my pathology slides, and now say that I have mucinous adenocarcinoma, albeit "low grade." The difference between this new diagnosis and my first one is that my "new" version is more likely to metastasize. So that was kind of a downer. The treatment is basically the same, however.

But I feel good about my decision to go with M.D. Anderson. The picture above is the door to the operating room (click on it to see it better). I found it a little spooky when I first saw it, like an antlion trap, and I felt like something was going to spring out and grab me and drag me in. But now, while I can't say I am excited about going through those doors, I am, again, getting tired of waiting. I'll probably regret saying that...but enough denial already, it's time to get moving....

HIPEC, the Chicago Method

I experimented with my own treatment methodology last night: HIPEC = High Intoxication Perfusion Enjoyed in Chicago.

I was visiting my old law firm buddy R, and we watched the Pitt/West Virginia game at a Chicago bar called Gamekeepers.

From there we hit a few other classic Chicago pubs. There was lots of yelling and laughing, a woman I probably insulted by correctly guessing her age, some West Virginia fan harassing R (while her boyfriend backed her up), and some guy wearing a scarf whom we made fun of by yelling "Hogwarts!" After that it's a little hazy. It appears from my photos that at some point we also took a cab somewhere. Through hyperspace, from the looks of my photo.... See other pics from the night here.

All in the name of medical science.


I ran the beer and onion rings off this afternoon, on a beautiful clear, cool day in Sheboygan. Ran out to the lighthouse too, gotta do that as much as possible before it all freezes over.

Photos of M.D. Anderson Visit

I've posted my photos on Flickr, along with some short notes under the photos. Click here to be magically transported to Houston....

Giant president heads....

Originally uploaded by d.w.eck

Did you know there are giant president heads in Houston? Yes, there are.

David Adickes SculptrWorx Studio. Click on that phrase and take a few minutes to read about this artist. Then bookmark Atlas Obscura to help plan your travels.

Click RIGHT HERE to see the rest of my big head pictures, if you are really interested.

Why do we resist going to the doctor?

Click here for an essay by Salon.com columnist Cary Tennis. In my opinion, he's the best advice columnist out there right now....

(Illustration by Zach Trenholm)

Visit to M.D. Anderson Cancer Center--quick update

Wow. It's like Willie Wonka's Chocolate Factory, if candy cured cancer.

Staring at the door....

I hate waiting. (my first appointment at M.D. Anderson Cancer Clinic)

This "journey" thing....

I wasn't buying into the whole "this is a journey" thing that I would hear other people use to to describe going through difficult situations. Part of my denial process. Today, at the Milwaukee airport's used book store I purchased a book on one of my favorite subjects--exploration back in the day when men ate their boots to survive. The book is called "Exploration" and is a series of entries in the explorers' own words, taken directly from their journals. Arctic and Antarctic voyages, expeditions through Africa, the Orient, all that good stuff. Months, even years long, some of those journeys. It took me most of today to travel from Wisconsin to Texas, 2 flights, 3 airports, etc. But silly fast compared to the olde days.

One chapter in this book is part of the journal of John Dundas Cochrane (1793-1825), a Scotsman who walked across Russia. Yes, walked. Well, it seems he hitched an occasional ride on a hay wagon. Anyhow, he was apparently kind of a dreamy, sensitive sort, a military man put out of work and adrift due to the end of the Napoleonic wars. Below is his account of the beginning of his journey, which I read on an airplane while traveling faster than Captain Cochrane could ever have dreamed possible. Heck, he wouldn't have cared anyway. He walked places, dammit:

I quitted the hospitable habitation of Sir Robert Kerr Porter, on the 24th of May; and, having had a lift in the carriage with four horses of Sir Robert, I, with my knapsack on my back, set out, and trotted over a partially cultivated country. A pretty avenue of birch trees lined the road, as if to accompany me as far as possible on my departure from the precincts of civilized man. Nature here got the better of a tolerably stout heart; and, as I turned round to catch a last glimpse of the capital I had left, and of the friends to whom I had bade, perhaps, a last adieu, I could not suppress my grief, and, had not my honour been committed, should certainly have returned. A sigh escaped me as I ejaculated a last farewell, till, startling at the expression of my weakness, I resumed my journey with slow and melancholy steps.

It was ten o'clock, (for I had now a watch), and I had reached six miles. The night was beautifully clear, though rather cold from the effects of a northern breeze; while the moon was near her full. I looked at the beautiful luminary, and actually asked myself whether I were, as had been asserted, under the baneful influence of that planet. Smiling that I received no reply, I then considered my projects and intentions, and the conduct I ought to follow; and, sitting down at a fountain on the Poulkousky Hill, I read to myself a few lessons, which the time and the occasion seemed to inspire.

"Go," said I, "and wander with the illiterate and almost brutal savage!—go and be the companion of the ferocious beast!—go and contemplate the human being in every element and climate, whether civilized or savage—of whatever tribe, nation, or religion. Make due allowance for the rusticity of their manners; nor be tempted to cope with them in those taunts, insults, and rudeness, to which the nature of thy enterprise will subject thee. Contemn those incidental circumstances which but too often surprise mankind from their good intentions, and deprive the world of much useful and interesting information. Avoid all political and military topics, and remember, that the proper study of mankind is man.

They didn't send text messages back then, they freakin' WROTE STUFF DOWN. Longhand. With big, fat, complete words, LOL. And they wrote in a manner that required you read it slowly, or twice or three times, to understand it.

Why am I boring you with this? I'm not sure. It just caught my attention. A crazy dude and his knapsack, wandering in an easterly direction across Russia, on foot, refusing to "contemn" any curveballs the universe might throw at him. Along the way he was robbed multiple times. He lost everything--even his clothes! Yet at every downturn he was saved by the kindness of the average people he met along the way. And he made it all the way across that huge and open country, just like he planned.


P.S. He wrote "ejaculated." Hee hee. Sorry. My deepness has a shallow end.

P.P.S. Captain Cochrane later died while trying to walk across South America.

Houston

Kinda surprised that it has so many trees. Not sure what I expected. More sand, I guess. Stupid northerner.

Top 10 Bizarre Tourist Attractions - Listverse

I'll adopt this as my vacation spot "must see" list.

http://listverse.com/2009/11/22/top-10-bizarre-tourist-attractions/

More International Night @ Lakeland

International Night

At Lakeland College tonight. $3 for all you can eat, with the
international students preparing food from their home countries of
India, Spain, South Korea, Venezuala, Kenya, China, Japan, Germany,
Malawi, and others. Delicious.

Morning run 2...

Morning run...

C-c-c-c-crambone....

I've never been to Texas. In my mind, all men in Houston look like this:

My kind of town, Sheboygan is...

November 20, 2009
Sheboygan ranked among cities with weirdest news

Sheboygan Press staff

Sheboygan's news ranks among the weirdest in the country, according to a recent analysis.

The city ranks 17th in the nation for the number of strange news reports, the highest for a city of its size, according to Tableseed.com. The company based its list on an analysis of 2,000 Associated Press "strange news" stories published over the last year.

Sheboygan is one of three Wisconsin cities in the top 25, joining No. 3 Madison and No. 21 Milwaukee. The ranking puts Wisconsin sixth among the 50 states.

Unusual Sheboygan Press stories picked up by the AP in recent months include the Sheboygan man, Calvin Gosz, who successfully sold his naming rights on eBay to a Finnish electronics Web site; a woman who stripped in an attempt to avoid arrest; a woman who ate marijuana during a traffic stop, and two inmates who fought over an episode of "The Office."

And, of course, there's the YouTube video of Mayor Bob Ryan making a sexually explicit remark about his sister-in-law. That yielded two mentions on the Jay Leno Show and a YouTube video with 59,000 hits.

Strange local stories not distributed by AP include a man who called his girlfriend 279 times from jail, a man who blamed a Jack Daniels steak for a failed breath test, a text message about a drug deal sent inadvertently to a cop, and a parishioner and pastor cited for using a bow and arrow in church, which was among the stories linked on weird news repository Fark.com.

According to the ranking, New York had the weirdest news, with Lincoln, Neb., Madison, Philadelphia, Chicago, Cincinnati, Boston, Detroit, Dallas and Pittsburgh rounding out the Top 10. Florida tops the list of strangest states, followed by New Hampshire, Alaska, Wyoming, Maine, Wisconsin, Vermont, Pennsylvania, North Dakota and Ohio.

Top Florida stories listed by the site included: "Man calls 911 after eatery runs out of lemonade," "Florida lotto winner seeks to open a nude dude ranch," and "Man wearing sleeping bag as cape attempts robbery."

Tableseed.com is a new Web site that says it helps restaurants get more customers through e-mail birthday clubs.

---

How do you pick a doctor?

After my CT scan, the first doctor I saw was a surgeon here in Sheboygan. My sources said he was an excellent doctor, but at that point my diagnosis was still unknown, only that there was a "mass." This surgeon wanted to operate right away. A couple of my co-workers who had serious health experiences of their own urged me to go to Froedtert, down in Milwaukee, for a second opinion. I was kind of in a haze then, and almost didn't go. But I did, and at Froedtert they were at least able to put a name to the mass. Once I learned what condition I had, and I managed to get my brain back and working enough to do some research, I quickly found that only a handful of doctors in the U.S. have real experience with this disease, and that it is a quirky and tricky condition to treat. The surgeon in Sheboygan would have been fine if it was just appendicitis, but I felt better with the Froedtert surgeon and Froedtert's specialized clinic at that point.

Luckily, the websites relating to this disease list the doctors that others have used for their treatment. But still, how do you pick the one to cut you open? Do you go to D.C., New York, Maryland, Cincinnati, San Diego, Pittsburgh, Omaha, Houston? I don't know. I participated in a webinar with a doctor from Pittsburgh, he was very approachable and engaging. I spoke to him on the phone a few days later, and I felt very confident about his abilities based on his patient references and reputation. His hospital does the most cytoreduction/HIPEC procedures in the country, I guess. But is that good or bad? I met with the only doctor in Milwaukee with any experience with this disease, but I just don't know if he has enough experience. How do you make a decision like that? If something goes wrong, do you second guess a decision to stay close to home but with a less experienced doctor and hospital? I think the best I can do is do my research, talk to 3 or 4 doctors, and then hope my brain is leading my gut.

I'm going down to the M.D. Anderson Cancer Center in Houston on Sunday, for 3 days of tests and to "interview" one of the doctors down there. I'm kind of excited, and of course nervous too. One of my fellow PMP patients warned me not to be freaked out by the "assembly line" feel of parts of that clinic, being that it is so big. And of course, Houston is warmer than Pittsburgh or Milwaukee in January, which is when I want to have the surgery!

Maybe it's medicinal, for, you know, pain and stuff....

November 18, 2009

Wis. DNR asks hunters to watch for drug operations

Associated Press

MADISON (AP) - State wildlife officials are asking hunters to keep an eye out for any drug-growing operations hidden in remote areas across Wisconsin.

The call comes after two sophisticated marijuana operations were found in the last two years. In both cases thousands of plants were found on public lands, in part because private lands can be seized if they're used to grow drugs.

Because the operations are well hidden, they're usually only found when hunters stumble across them. So the Department of Natural Resources wants hunters who spot anything suspicious to tell authorities.

DNR warden Randy Stark says hunters who see something shouldn't put themselves in danger. He says they should back out the way they came, and later write down their location and other observations.

twitter

Go Muskies! Lakeland FB NCAA Div. III playoffs vs No. 2 Whitewater http://tiny.cc/wu2hH best logo in college sports http://twitpic.com/pzqi4

Concealing the pain....

I have some different pain issues after my surgery than before my surgery, in different places and of a different nature. Like other feelings, pain is hard to define and hard to communicate to others in specifics. I mean, try explaining verbally and specifically HOW something hurts, describing it in qualitative details other than "like a son of a bitch" or "real bad." Do it for fun the next time you are injured. Heck, for that matter try describing feeling sad, or good, or mad.

Anyhow, I end up saying things like it hurts "in here" and "over here some" and "it feels like a... like a... a sharp, but not tingly, hit to your funny bone that makes you queasy," etc., etc. Probably wasting my breath. I think the basic rationales for pain management decisions are 1. how much pain you can take, and 2. how long the pain lasts. Hospitals use the scientific chart shown below to translate your pain into an ordinal scale ranking system that the staff can work with, calculating how much morphine (at first) or other painkillers they will give you. I find the chart a little silly.

I want to punch it in its several faces.



I think they should just ask you to swear, and compare it to this next chart, which is the the BBC's survey of offensive words, used internally for editing BBC stories. (F*@king click on the chart to make if f*#king huge, unless you are an easily offended wanker.) A much better chart.

At my first post-surgery check-up, the doctors did not have much to say about my post-surgery pain, other than it might go away. I can't keep chomping on Advil like it's Pez, so I'm trying acupuncture. The first picture is of one of the needles in my forearm.

I had two in each forearm, one in each ear (the upper fleshy part), a few in each shin, some in my feet, and as you can see, more needles in my washboard abs. (Yeah, she had to pound those in with a hammer....)

After two sessions, all I can say is that the sessions are very relaxing--a warm room in a beautiful old converted church, funky Asian music, candles, very comfortable--and that I don't feel any pain during the approximately 45 minute sessions. However, I didn't notice any change after the first session, as the pain came back, but my acupuncturist said it might take 2 or 3 sessions. Had my second session tonight. We'll see....

I suspect one old friend (not age-wise, but from the idyllic olde days back along the Mississippi River) is rolling his eyes at this. I have one word for you, buddy: Leeches.

Good Question...

A few of my friends have asked how I found out I had this disease.

After high school, I've had an up and down battle with weight. Being 6'4" I could pack on a lot of extra pounds, like a typical American. Last January I started working out in earnest, first on the elliptical trainer in the basement, while watching movies, and eventually I moved outdoors to start running again (when I lived in Illinois I had a 2 year period where I ran all the time). I also stopped eating junk food. Over the course of months I lost 55 pounds, and I was running 10-15 miles a week. Just casual running, not anything fantastic.

Once I lost all that bubble wrap from around my midsection, I started feeling some pain. I thought it was a pulled muscle, or an ulcer. Finally after about 3 months of pain (and after I had to stop running because of the pain) I went to the doctor. She ordered a CT scan. The "death panel" at the insurance company denied coverage, so I was about to skip it. But the doctor insisted and argued with the insurance company. I got my CT scan. Luckily. The pain was either the tumor displacing organs or nerves, or the goo in my belly making things stick together (yes, that is gross).

Right now I feel pretty darn good, actually, besides some annoying lingering pain from my first surgery. And last night I went for my first run since July 26 (according to my Runkeeper app on my GPS enabled iPhone). I went for a very slow 2.5 mile run along the lake. Cardio-wise, I felt like I could have run farther, but my legs were tired. It's amazing how fast muscle disappears. I have not gained any weight back (in fact, I am now 60 pounds below my max) but I think I lost muscle mass and replaced it with some fat. So, back to exercising. I need to be in shape for the next surgery!

The next steps...

Cytoreduction surgery, and HIPEC treatment, hopefully in early 2010. Cytoreduction is removing any remaining tumors from the abdomen. The doctors "open you up from stem to stern" (thanks, doctor-who-shall-remain-nameless, for that folksy description), basically from your pelvis bone to your sternum, to remove any remaining tumors, tissue connected to tumors, any affected tissue or parts of organs, etc., as needed. Since my tumor was caught relatively early and my diagnosis runs to the less invasive side of the PMP spectrum, I'm hoping the procedure as performed on me will not be as extensive as some I have read about.

After the surgery part of the day, the doctors close you up and pipe heated chemotherapy solution through your abdomen for an hour or so, jiggling your belly around to get the chemo wash into all the nooks and crannies, thus killing all the bad cells that weren't physically removed by the surgery. HIPEC, it's called.

Cytoreduction and HIPEC go together, like cookies and milk. The completeness of the cytoreduction surgery is very, very, important, from what I have read. If the cookie is bad, the milk won't make your snack any better. You can see video of the procedures in the links on the home page of this blog. But don't be eating cookies and milk while you watch them.

I guess I stand a good chance of losing my bellybutton due to the surgery. If anyone has any good ideas what to do, tattoo-wise, for a reverse "L" shaped scar covering my bellybutton-less abdomen, let me know in the comments section. But I may run a contest on that later, so maybe you should hold on to your best ideas for now.

I'm still deciding where to have the surgery, more on that later too.

Wishbone

Dogsitting a 3 legged dog this weekend. But with the help of my iPhone and the "Brushes" app--viola!

Cats

I'm dogsitting at a friend's house this weekend. House next door has cats. On leashes. (Click on the photo to embiggen it.)

My first CT scan

Taken August 10, 2009. The round thing surround by the arrows was the 2.5 cm diameter thing on my appendix. The tumor was removed as part of my appendectomy and right hemicolectomy on August 31, 2009, at Froedtert/Medical College of Wisconsin. I was in the hospital for 6 days, and total in-hospital and at-home recovery time was one month.

The story so far....

In August of 2009 I was diagnosed with Pseudomyxoma Peritonei, or PMP. Pseudomyxoma Peritonei is a rare disease (one in a million! yay, Dan!) that is characterized by the progressive accumulation of mucus-secreting tumor cells within the abdomen and pelvis. The disorder develops after a small growth or polyp located within the appendix (causes unknown, but it is not genetic) bursts through the wall of the appendix, and spreads mucus-producing tumor cells throughout the abdominal cavity. As mucinous tumor cells accumulate, the abdominal area becomes swollen and digestive and other functions become impaired as the organs get coated with this mucin, and the organs can fail. This swollen state is called "jelly belly" when it gets bad. You can end up looking like you are 7-8 months pregnant. I don't have jelly belly yet, as they found my PMP early, by accident. Which is good! Most people find it later, much later, when their bellies are huge or they have some organ problems. Here's one of the major support groups for this disease: http://www.pmpawareness.org

My tumor was not technically a "malignant" cancer, in that it won't metastasize to other parts of my body. So that's also very good! And the tumor was successfully removed during my surgery on August 31, 2009, along with my appendix and some other stuff in there that I apparently don't need. But the tumor was leaking and mucin had already spread inside my abdomen. While most of it was removed, some of the goo no doubt remains in the nooks and crannies, and on a cellular level, so it will almost certainly cause more tumors to grow, and thus create more mucin, then more tumors, and so forth, etc. So while it is good it was not malignant, it will still spread and cause problems if untreated.

So, the plan is to let my current surgery wounds heal, stay healthy and in shape, get another CT scan soon, and see if any new tumors have appeared. The doctor doesn't think any tumors will have appeared by then, as this is typically a very slowly progressing disease. In any event, they will check then.

Regardless of the appearance of any new tumors, in early 2010 I will have what is known as cytoreduction surgery, along with hyperthermic intraperitoneal chemotherapy ("HIPEC"). More on that later. The hospital stay can be pretty long if there are complications. I think a week if I am lucky. The treatment is very promising, though. I could have this surgery before any tumors reappear, or wait for new tumors to show up. My thinking is it would be better to do it while I am healthy, before any new tumors, if possible. The current doctor seems to agree.

So, the good news is they caught this very early, and I'm other than this I'm generally healthy and in good shape. I'm researching the doctors that perform this cytoreduction and HIPEC procedure on a regular basis (there aren't many in the U.S.) to get a second opinion, and to decide where to have the surgery. I have some time to think about these things, which is also good!

So there you have it! PMP!