Friday, November 11, 2011


That's the number of visits to this blog in almost exactly two years. November 13, 2009, is the date of my first post.

Lucky number 25,000 is a visitor connecting from Florida. Hello, Florida!

[I deleted a comment I made about t a t t o o s being like 8% of my search hits, because that was compounding the problem!!]

Regardless, the majority the search terms that lead people to my site are not surprising: PMP, Keith Fournier (my doctor), HIPEC, appendix cancer, etc.

Happy Nigel Tufnel 11/11/11 Day!

Thursday, November 10, 2011


This article rings pretty true. I like it here.

SHEBOYGAN, WIS. — In a lakefront town perhaps best known for its jaunty name and mouth-watering smoked bratwursts, there’s a new claim to fame: the most equal city in America.

According to the latest statistics from the U.S. Census Bureau, the city and suburbs of Sheboygan, Wis., have the smallest gap between the rich and poor of any metropolitan area in the United States.

While Occupy Wall Street protesters rail against the runaway wealth of the upper crust, here the top 5 percent take home a much smaller proportion of the region’s wealth (16 percent) than in the U.S. at large (22 percent). To talk hard numbers, the top 20 percent of Sheboygan County makes a median income of $127,440, while the general workforce makes around $50,000.

In fact, the city’s Gini score — a measure of income inequality on a scale from 0 to 100, with bigger wealth gaps measuring higher on the scale — is 39, lying closer to Canada’s figure (32) than that of the U.S. as a whole (47).

Residents say the city reminds them of how America used to be, when there was no such thing as a “middle-class crisis.”

“I guess I am not real surprised,” wrote Helene Capizzi of the Sheboygan Public Library in an email to The Daily. “Sheboygan reminds me a lot of what it was like to grow up in Milwaukee in the ’60s. We’re always a decade or two behind the trends, but I think that’s what we like!”

Indeed, visitors to this modest, quaint town might be excused for thinking they stepped out of a time machine from the Eisenhower or Kennedy years. Here, polka bands still draw crowds in the summer, parents safely let their kids roam unsupervised and busy manufacturers keep pumping out goods proudly “made in the USA.”

While employment in the relatively well-paying manufacturing sector has plummeted nationally, now accounting for less than 10 percent of jobs, in Sheboygan, one-third of workers hold jobs with manufacturing firms that produce everything from plastic wares to shower heads for luxury spas.

Kohler, the household name in plumbing products, is headquartered in its namesake city outside Sheboygan and is the area’s biggest private employer. Other local companies include Vollrath (maker of stainless steel cooking ware) and Bemis (toilet-seat manufacturer), which employ hundreds of workers each.

Partly as a result of the area’s still-healthy industrial base, the unemployment and poverty rates are lower than in America as a whole.

“It’s pretty much a middle-class town,” said Myron Rabinowitz, 62, who owned a steel company in Sheboygan for decades. “There’s not an abundance of wealth. Most people are middle-class workers.”

This egalitarianism is visibly on display at the Sheboygan Yacht Club — an institution that in other places might be synonymous with wealth, exclusivity, even snobbery. Here, on the stunning western shore of Lake Michigan, the roughly 400 members of the yacht club come from all economic backgrounds.

“It’s a working man’s club,” said Rolf Simonson, 68, the “commodore” (i.e., president) of the club. “You can’t just buy your way in. Everyone who joins has to put in their 50 hours. You get all walks of life: You get the factory guy at Kohler, you get the president of some company. … When you’re working in the boatyard, you’re the same as everyone else.”

Simonson, a retired pediatrician, lives in the town of Kohler, which is seen as the relatively more affluent suburb of Sheboygan. Though a few luxury homes can cost a half-million dollars or more, an attractive house in Kohler can be had for $200,000 or less, according to current listings. (Many homes in Sheboygan proper cost roughly half that.)

Because of this lack of real-estate extremes, some residents struggled even to identify the bad parts of town. “We don’t have good and bad neighborhoods,” said Simonson. “You might find a bad house next to a nice one.”

The city retains vibrant local traditions, such as Friday Night Fish Frys at nearby taverns, and “Brat Days,” a festival held since 1953 in celebration of sausages. “People here really like tradition,” said Capizzi. “I think we are very community-minded. I always call it a big, small town.”

Like the small towns of yesteryear, Sheboygan also prides itself on being exceptionally free of violent crime. In 2009, the city was ranked as the second-safest in America out of 332 metropolitan areas. Outsiders covet the city’s relative safety. Jason Bull, 39, the principal of Sheboygan’s North High School, said he moved to the area from Milwaukee partly because he and his wife “wanted our kids to run loose and not have so many concerns.”

The public school system also remains a point of pride. With 10,000 students, the Sheboygan Area School District exceeded state averages in test scores for 10th-graders in multiple categories, including math.

“What makes the school good is that parents are invested, they care,” Bull said. “The saying ‘It takes a community to raise a child’ is embraced in Sheboygan more than in other places.”

Simonson boasted that the public schools were good enough so that “here, rich people don’t send their kids to some academy somewhere.”

The spirit of engagement extends to volunteering. Marilyn Montemayor, 70, has served as an alderman, a library board member and a teacher of French cooking at the art museum. Mary Eckardt, 61, a lifelong resident, said she volunteered at a women’s shelter and a retirement home.

Not that the town is without problems. In the late 1990s, Bull estimated, the percentage of students on free or reduced lunches was in the “high teens, low 20s.” Now, Bull said that figure was 37 percent.

“We have seen an increase in transient-type families coming to the school,” he said. “The economy, the world, America, it all affects Sheboygan.”

Signs of economic distress are also apparent at the public library, a bustling three-story building downtown. One display covers the theme, “Thrifty Living,” and showcases books such as “Two Incomes and Still Broke?” and “Save Now or Die Trying.”

And the beer-loving city has lately been in the grip of a booze-fueled political scandal. Mayor Bob Ryan, an alcoholic who has lapsed repeatedly, faces a possible recall election after going on a three-day bender this summer that ended in a bar fight. Citizens have gathered more than 4,000 signatures in support of recalling Ryan, despite widespread sympathy for his vice. “You’d be surprised how many people think it’s no big deal because everyone gets drunk,” said Capizzi.

But even as Sheboygan faces uncertain times, locals are proud that their fortunes generally rise and fall in tandem. Montemayor noted that while the economy was tough, “most people have taken the ride down together.”

This is perhaps one reason why inequality has come to the fore: Many Occupy Wall Street protesters wish the country could return to more egalitarian times — not only in terms of economics, but also in terms of political influence.

Katherine Curtis, a sociologist at the University of Wisconsin-Madison, told The Daily that “when we see a community with less inequality, what that means is that there’s less likelihood of polarization. We might have differing views, but the distribution of power is not so extreme.”

That seems to be how the residents of Sheboygan like it.

“We may not fly with the eagles at the best of times,” Simonson mused, gazing out at the harbor, “but we don’t go down when times are bad.”

Wednesday, October 12, 2011

out of whack

Monday, September 19, 2011


I returned from Houston last week, from my latest check-up. No evidence of disease (NED is my friend!) and tumor markers are all well below safe levels. My doctor is considering letting me go a full year without a scan, rather than 4 or 6 months. Which would be great, given the levels of radiation emitted by CT machines. So, now I can push this out of my mind for a while.... After a few more words, right?

Ivanna, Caroline (Randy's spouse), Randy, Val, and me.
I'll refer you to this post by Ivanna (click HERE) for details on the trip and an impromptu gathering of friends in Houston, an event she named "Appendilooza." Ivanna is a real writer--very thoughtful, and she managed to capture in writing the essence of two quick days we spent together. I don't think I could have explained all the feelings the way she did. I hereby adopt her post as my own.

It felt right to meet these people face-to-face. Randy and his lovely wife Caroline (Houston) are new friends, but I've known Ivanna (Austin) and Val (Kansas City) for a while, and it seems like we are old friends.

I've met a number of people with appendix cancer and/or their caregivers, in addition to these friends, and we follow our respective ups and downs closely. It can get quite emotional. It seems like a month does not go by without someone passing away. Maybe I did not know them well, but it is sad all the same. But, on the other hand, we all celebrate the annual check-up and "all clear" results, and I love to hear the stories of people years out from the surgery, living healthy lives.

So, what would a trip be without some random pictures?

And how could a guy like me NOT pull over when the sign says TEXAS PRISON MUSEUM. This is "Old Sparky":

Below is only part (!!) of my cousin John's Star Wars collection. John lives near Fort Worth with his lovely wife Tammy (an awesome cook!) and his 10 year old son Joseph--who paid me the ultimate compliment, saying I looked like either Han Solo or Indiana Jones.

I spent a night in Dallas at the house of my Uncle Terry and Aunt Nancy, who have been big supporters over the past few years. I am eternally indebted to them for their constant "checking in" on me when I was ill. 

And if you've been following my blog, you know that wherever I am, I like to eat like the locals...this was just off the interstate, somewhere between Dallas and Houston.  

chopped BBQ  beef,
beans, and a sweet tea

Change of topic, kind of: I'm a big fan of Roger Ebert. I read his movie reviews and his blog, and follow him on Twitter. Ebert is a cancer survivor too, and he has written very eloquently about the experience, and also wrote an incredible essay about being alone which I bookmarked and still occasionally read. 

One of his recent blog entries really grabbed me:  "Films that are not for the dying so much..." In it he comments on two recent films about falling in love when you have cancer. I had not heard of one of the films, but the other, titled "50/50," is getting a lot of buzz. I think I'll try to see it, I'm not sure. Watching shows or movies about cancer can be kind of tough (I am going to a funeral for a co-worker/friend tomorrow, and he died of cancer; we were going through our respective treatments at the same time--I don't know how I'll react). But I do like Seth Rogan. 

Anyhow, please read that essay by Ebert. In particular I enjoy that he mentions how the patients in these two films "have a great deal of time do so romantic things and occupy touching spaces and talk as if they had more time." He contrasts that movie world with the reality of what cancer patients and their loved ones actually go through, including a very touching tribute to his caregiver/wife....

Here's the trailer for one of those movies. (Joseph Gordon-Levitt's character's attractive, female therapist is like, what, 19 years old?)

Okay, time to go back to living my life.... I don't want this experience to outwardly define me. I know it is a part of me and always will be, and I'm strangely thankful for that, but there's more to life than just this.  

Saturday, August 13, 2011

HIPEC in the NY Times

Full article below, clipped from

The media sucks. They make this seem like some scam by inflating some controversy until it looks like it is as big of a deal as the successes of the procedure--which are incontrovertible when it comes to appendix cancer. The reader comments are interesting, go to the website to read them (good comment by my bud Randy!). Lots of long term survivors chime in. Also a lot of crackpots. Sure, it may not work for every form of cancer, but why then dismiss it? Sometimes I lose faith in my fellow citizens.

Bottom line--the procedure saved my life. (The article did kind of creep me out, it reminded me of what an invasive surgery this was...)

August 11, 2011

Hot Chemotherapy Bath: Patients See Hope, Critics Hold Doubts

SAN DIEGO — This is cancer therapy at its most aggressive, a treatment patients liken to being filleted, disemboweled and then bathed in hot poison.
The therapy, which couples extensive abdominal surgery with blasts of heated chemotherapy to the abdominal cavity and its organs, was once a niche procedure used mainly against rare cancers of the appendix. Most academic medical centers shunned it.
More recently, as competition for patients and treatments intensifies, an increasing number of the nation’s leading medical centers has been offering the costly — and controversial — therapy to patients with the more common colorectal or ovarian cancers. And some hospitals are even publicizing the treatment as a hot “chemo bath.”
To critics, the therapy is merely the latest example of one that catches on with little evidence that it really works. “We’re practicing this technique that has almost no basis in science,” said Dr. David P. Ryan, clinical director of the Massachusetts General Hospital Cancer Center.
But to some patients, the procedure, however grueling and invasive, represents their best hope for survival: “It’s throwing everything but the kitchen sink at cancer,” said Gloria Borges, a 29-year-old Los Angeles lawyer who had her colon cancer treated with what she called the “pick it out, pour it in” procedure.
For hours on a recent morning at the University of California, San Diego, Dr. Andrew Lowy painstakingly performed the therapy on a patient.
After slicing the man’s belly wide open, he thrust his gloved hands deep inside, and examined various organs, looking for tumors. He then lifted the small intestine out of the body to sift it through his fingers.
As he found tumors, he snipped them out. “You can see how this is coming off like wallpaper,” Dr. Lowy said as he stripped out part of the lining of the man’s abdominal cavity.
After about two hours of poking and cutting, Dr. Lowy began the so-called shake and bake. The machine pumped heated chemotherapy directly into the abdominal cavity for 90 minutes while nurses gently jiggled the man’s bloated belly to disperse the drug to every nook and cranny.
The treatment is formally called cytoreductive surgery followed by hyperthermic intraperitoneal chemotherapy, or Hipec.
Recent converts include University Hospitals Case Medical Center in Cleveland, Montefiore Medical Center in the Bronx, and even Massachusetts General. The Memorial Sloan-Kettering Cancer Center is looking at it, according to people in the field. Advocates predict that the number of procedures could grow to 10,000 a year from about 1,500 now.
The therapy has even been featured on an episode of the TV series “Grey’s Anatomy.”
But Dr. Ryan, a gastrointestinal oncologist, suggested in an interview that the procedure was being extended to colorectal cancer because “you can’t make a living doing this procedure in appendix cancer patients.”
He debated the procedure publicly at the recent annual meeting of the American Society of Clinical Oncology. While some patients did seem to live much longer than expected, he said that they had been carefully selected and might have fared well even without the therapy.
Proponents say that if cancer has spread into the abdominal cavity but not elsewhere, then lives can be prolonged by removing all the visible tumor and killing what’s missed with Hipec.
By contrast, said Dr. Paul Sugarbaker, a surgeon at Washington Hospital Center and the leading proponent of Hipec, “there are no long-term survivors with systemic chemotherapy — zero.”
Dr. Sugarbaker, who opposed Dr. Ryan in the debate, said that it has long been known that cancerous cells are unable to withstand as much heat as healthy cells. And putting the chemotherapy on top of tumors should be more effective than systematically delivering it through the bloodstream.
One randomized trial done more than a decade ago involving 105 patients in the Netherlands did show a striking benefit. The median survival of those getting surgery and Hipec, plus intravenous chemotherapy, was 22.3 months, almost double the 12.6 months for those getting only the intravenous chemotherapy. But 8 percent who got the surgery and Hipec died from the treatment itself. And critics say that since that trial was conducted, new drugs have come to market that allow patients with metastatic colorectal cancer to live two years with intravenous chemotherapy alone.
A new trial in the United States has been temporarily suspended so that researchers can find a way to recruit patients. After nearly a year only one patient had enrolled, because people were reluctant to chance winding up in the control group, according to one of the investigators.
While proponents contend that the risk of dying from the surgery has been reduced since the Dutch trial, the procedure still lasts eight hours or more and full recovery can take three to six months. “It’s maximally invasive,” said Dr. Sugarbaker, who often removes the “spare parts” — organs a patient can live without, like the spleen, the gall bladder, the ovaries and the uterus.
The cost of the surgery and Hipec, including hospitalization, ranges from $20,000 to more than $100,000, doctors said. While Medicare and insurers generally pay for the operation, the heated treatment may not be covered. But doctors added it may be if it is described merely as chemotherapy. Some patients, like Ms. Borges, who is a fitness devotee, recover well and say the procedure staved off a death sentence.
But Dr. Alan Venook, a colon cancer specialist at the University of California, San Francisco, said that a couple of patients referred by him had “died miserable deaths. One lost much of her abdominal wall to infection and just died in misery.”
Another risk is that the surgery may be done unnecessarily. CT scans cannot pick up many of the small tumors, so it is often unclear how much cancer is inside until the patient is opened.
In June, Dr. Lowy sliced open a woman and saw, to his horror, that she had more tumors than he could remove. Taking out only some would not improve her chances of survival, so he closed the incision, and she is now starting intravenous chemotherapy.
Things with the male patient, Andy S., went better. A 41-year-old father of two from near San Francisco, Mr. S. agreed to let a reporter observe the surgery, but asked that his full name not be published because he did not want his cancer history to surface through Web searches.
Mr. S. had abdominal pain eventually diagnosed as appendicitis. But the appendix was found to be cancerous. Such cancers typically spew mucus containing tumor cells into the abdominal cavity. So he signed up for surgery and Hipec with Dr. Lowy.
“I’ve had to say my goodbyes to everybody,” Mr. S. said the day before the operation. “I had to talk to my priest. I had to do all these things I never thought I’d have to do at 41. I wouldn’t wish it on my worst enemy, but I have to go through with it.”
Dr. Lowy explored the entire cavity from the diaphragm to the pelvis. He found mucus in several spots that he sopped up with a cloth and also tiny tumors the size of a pencil eraser that had implanted in several spots. He snipped those out and sewed up the wounds. He removed the right side of the man’s colon and the omentum, a fatty structure.
Then two Y-shaped tubes hooked to the Hipec machine were inserted into the abdominal cavity, one to deliver the chemotherapy and the other to bring the drug back to the machine to be reheated. The incision was sewn up around the tubes so the chemotherapy would not leak.
The man’s belly was filled with three liters of saline fluid and the chemotherapy, a generic drug called mitomycin C, heated to 42 degrees Celsius, or nearly 108 degrees Fahrenheit. Any hotter could have caused injuries. Bloated with liquid, the man’s torso resembled a water bed.
After 90 minutes, the fluid was drained and the incision reopened for a final check before the patient was stitched up. The procedure took six hours.
“We got all of the visible disease, and he didn’t have a lot of visible disease,” Dr. Lowy said with satisfaction.
Mr. S. left the hospital eight days later, happy to have undergone the treatment. “I want to have the best chance I can have to never see this again,” he said.

Wednesday, August 10, 2011

Happy Tumor Day!

Yep, August 10 is Tumor Day--two years ago today I had a CT scan and the doc called shortly thereafter with the news. Two years down, 40 or 50 to go!

It's a beautiful morning in my back yard, I've been enjoying coffee out here since about 6:30 a.m., catching up on emails, reading the news, etc. Kids are sleeping in, and we are in the midst of a fun "stay-cation" week. All three of us are re-charging our batteries.

Things are good.

Saturday, July 30, 2011

Sunset on my little brother's boat....

Monday, July 25, 2011

Doin' good....

No real news. I'm posting this because I used to find "health" blogs that seemed to just....end. I would wonder if the writer had simply moved on, or something went wrong.

Well, all is great. I feel good, health is good, and I'm having a great summer!

- Posted using BlogPress from my iPhone

Friday, July 8, 2011

More Sheboygan PMP news.... good news!

From the Sheboygan Press:

A driving force: Mark Reinemann starts new career path after cancer bout
Written by

Deanne Schultz 

11:28 AM, Jul. 1, 2011
Editor's note: This was a Special Report print-exclusive story that ran Sunday and is now available to online readers.

Mark Reinemann opened Cruise Control Driving School, LLC, with a pretty straightforward goal – to show people how to become safe, defensive drivers, teaching them skills they can take on the road for years to come.

During his first class, Reinemann filled the whiteboard with diagrams of traffic patterns, explaining the process the students will go through once they take the wheel.

"My goal is to get you to be safe, safe drivers," he told them. "I'll be teaching you to scan, identify problems, predict what problems may arise, decide what to do, and execute. That whole theme will be carried on through your training."

Things took a more serious note when 
Reinemann showed a DVD of some of the hazards teen drivers face, including how inattentive driving plays a role in increased crash rates. The class as silent during the movie, but Reinemann didn't let things stay that way for long — his goal is to make class and behind-the-wheel fun and informative, teaching students skills they can take with them for the rest of their lives, something Jessica Moyer can attest to. "Thanks to Cruise Control, I'm having fun in the classroom while learning to drive safe and responsibly," Moyer said. "Mark … puts a lot of work into the lessons to make class interesting."

Reinemann's career started 25 years earlier, and the only thing it had in common with a driving school was the company car McDonald's gave him, a car he used to drive thousands of miles back and forth between the north and south side restaurants he managed in Sheboygan. His teams earned him awards as he logged in some pretty long workweeks.

"I loved my crew and my customers," Reinemann said, "and truth be told, I had it very nice —seven weeks (of) vacation, a new company car every other year, a very nice salary, but they expected a lot. I was in $3 million restaurants, and they wanted a 5 percent increase on top of that. There was a lot, a lot of stress." Reinemann also found time to serve as a volunteer baseball coach at Sheboygan South High School, work he enjoyed. 
Then in February 2009, Reinemann's appendix ruptured; within it lurked a tumor. His kidneys started failing, and doctors at Froedtert Hospital in Milwaukee started him on a regimen of immunosuppressants and cyclophosphamide. Four months into the treatment, he submitted a urine sample to have his body's protein loss measured, and that same evening, the doctor from Froedtert called.
"He said 'when, not if, you start passing blood, get yourself to the emergency room because you only have hours to live,'" Reinemann recalled. Thankfully, that didn't happen, but more was just around the corner.

A CT scan in February 2010, showed abnormalities in his abdomen, and doctors diagnosed pseudomyxoma peritonei, a rare tumor characterized by extensive mucus accumulation within the abdomen and pelvis.
"The microorganisms from the tumor started to grow on the outside of my internal organs. That wasn't good," Reinemann said. "The tumor gets sticky on the outside of your organs. Once it hardens, you're in trouble because it cuts off the blood flow to your major organs."

Not one to sit back, Reinemann began his own regimen, daily bike rides of 15 miles to strengthen his cardiovascular system and bulk up for what he knew was coming.

One of the people who helped Reinemann through the ordeal was the Rev. Jim Hollister, senior minister of First Congregational Church, UCC, in Sheboygan. The pair biked together and Hollister held a "laying on of hands" during one worship service. "Mark's body was very weak for a while, but his spirit was strong," Hollister said. "His eyes lit up with life and joy during these preparations … prior to what he called his 'mother of all surgeries.'"
Reinemann and his family flew to see Dr. Armando Sardi, director of the Institute for Cancer Care at Mercy Medical Center in Baltimore, arriving, surprisingly enough, with "a sense of peace. I didn't fear death," he said.

There, on June 15, 2010, he underwent a 10-hour surgery performed by three surgeons who "had to scrape, cut, laser, burn, whatever they could to get the tumor off," Reinemann said. "I had hot chemo injected in me and I was swished around like a washing machine for 90 minutes to hopefully kill all the microorganisms." The surgery realigned his digestive system, removing his appendix, spleen, gall bladder, half of his left kidney, a foot of colon, umbilical cord and omentum, basically leaving him with an internal structure that would hopefully be unable to harbor microorganisms.

"My body may have been failing, but my spirit and mind were getting sharper and sharper," Reinemann said, pausing as tears filled his eyes. "I had such support from family and friends." Scott and Barb Stangel, members of the softball team sponsored by First Congregational Church, UCC, organized a fundraiser for Reinemann.

Scott Stangel said at the time of the game, "Mark was in Baltimore recovering. We were able to Skype him from the park and all his church teammates were able to talk to him. It truly was a great night."

During all this, Reinemann had plenty of time to contemplate his future. Going back to McDonald's would have been easy, but something else nagged at him.

"This had to have some meaning," he said of his medical ordeal. "Why did it happen?"

Hollister said he and Reinemann "had some good talks about his career options … He prayerfully considered many options, including returning to work at McDonald's."

Reinemann, 51, who won awards for leadership at McDonald's, had long enjoyed working with youth, and had a sense that he needed to find a new career dedicated to helping others.

"This may sound weird, but I woke from a dream and it was in my head," Reinemann said of the idea to create a driving school dedicated to teaching "kids to become safe, defensive drivers, something they can utilize their whole lives."

Working with the Division of Vocational 
Rehabilitation, Reinemann submitted a business plan for Cruise Control Driving School, and was awarded funding. This past January, he took classes at Advanced Driver Training in Green Bay, becoming licensed and certified by the Department of Transportation.

McDonald's wasn't forgotten, though — Reinemann incorporated philosophies from his quarter-century of employment there into his new venture.

"I'm focusing on service. At McDonald's, it's giving quality service, cleanliness, and quality of food," he said. "Here, it's going to be 'are the kids catching on? Am I relating to them, reaching them? One of Ray Kroc's sayings is 'none of us is as good as all of us,'" noting that he's applying that team concept to Cruise Control, including the parents as part of the driving team.

"The parent is key to the child driving safely," Reinemann said. "They're the first instructor."
Cruise Control Driving School
» Owner/licensed instructor: Mark Reinemann
» Address: 1534 Ohio Ave., Sheboygan
» Phone: 920-803-2553
» Website:
» Email:
» Cruise Control Driving School also provides driving instruction to adults 18 and over who have their temporary license and are preparing to take the road test.

Wednesday, June 15, 2011

Wasted Chance....

Remember I mentioned that other Sheboyganite with appendix cancer, the 4th that I know of? Click here for my post on her, but click here for the newsletter article that I got in the mail, that's how I found out about her.

And click here for her obituary. She died a few days ago, I guess. Signet Ring Cell.

Dammit. I never even tried to contact her. I thought about it, but I needed a break from the whole cancer thing, so I didn't. I don't know if that sounds callous, but sometimes I have to really step back and get perspective. So many deaths lately, it seems, at least on the patient advocacy website (PMP Bellybuttons Club).

I feel bad I never met her. Heck, turns out she lived 5 blocks away from me. I probably passed her walking our respective dogs on the lake shore, and never even knew it was her.

Well, there has also been a spate of longtime survivor anniversaries. So, some good things, too. Never forget that!

And congrats to Sheboygan Mark--1 year old!

Tuesday, May 24, 2011

scans all clear....

Hello PMP buddies...

Got word from Dr. Fournier down at MD Anderson today about my latest scans (last week). Looking good.

I'm 16 months out from my MOAS. Ran a quick 3 miles tonight to celebrate. I've actually joined a running group for the summer to train for a half-marathon in September!!

I'm on a 4 month CT schedule (yes, Mark, I know you are on a 6 month schedule already!!), and hopefully this fall I can get that moved to a 6 month schedule.

On with life....

I hope you are all doing well!!



Daniel W. Eck

Tuesday, May 17, 2011


I haven't posted in a while, so here's an email I just sent to a friend, in lieu of an original update!

Hey [fellow cancer buddy],

I'm doing good! Japan was a quick trip, only there 5 days. Too much going on back at work to stay, and didn't want to tempt fate. Only felt a few minor aftershocks.

So, just working for a living, getting by, staying happy... Not much to report. Got my check up scans coming up here on Thursday, in Sheboygan. So it doesn't seem as stressful. The scans and test results will be sent down to Houston, so I'm not sure when I'll hear back. Kind of weird doing it that way.

I've been taking a PMP break for a while, I think, kind of stepping back from really engaging any new patients with advice. I've been watching others take up that role. Hopefully I'm an "old timer" in that respect, even though I'm only, what 16 months post-MOAS. Seems longer, for some reason. The time machine effect, maybe. I'm following Rachel's journey, too. About all I can handle for the time being!

[Another cancer buddy] and I emailed a bit a while ago, we are thinking about scheduling our fall MD Anderson trips to coincide, and perhaps you and [husband] can drive over and meet us too! A big PMP party.

You sound really good, getting some sailing in, eh? My boss has a sailboat he hasn't had out for a few years (he had kidney failure, and miracles of miracles got a working transplant last fall!)... we're talking about getting his boat out and slipped at the local yacht club, like he used to do. Since he is under some exercise restrictions due to his kidney transplant he would "command" and helm, and I would do the heavy lifting (winching, raising the sail, swabbing the decks, etc.). I told him that sounded an awful lot like our typical work days, but okay, at least it is outside.

Sheboygan Mark and I tried to grab a beer last week, but he ended up going turkey hunting. We'll get together soon, he's taking me fishing this spring....

My employer (the college) has a fundraising gala Saturday night, so I have rented a tux so I can be cool and all that... It's usually a great party, really nice and fun people attend, it's a joint fundraiser for the college and the local symphony. It's staged like dancing with the stars. See:

So, can you top that? :) What's new down in [your city]? Do you sometimes get tired of being remarkable?



Tuesday, April 19, 2011

March of the Salarymen. 

Tokyo. Using a guidebook/map is so much better than GPS. You learn much more with a real map. 

Sunday, April 17, 2011

Back in Tokyo....

Our Tokyo campus is having its opening ceremony tomorrow. In Japan the academic year starts in May.

I've done some reading on the radiation threat in Tokyo, and here's what I've been able to figure out for sure: No one knows much about much.

That's slightly sarcastic, but it is frustrating that there is such a wide range of allegations of facts about the situation and its impact. Most of the doomsday predictions are predicated upon either 1) the Japanese government hiding the true information about the amount of radiation released, or 2) a catastrophic explosion happening at the Fukishama plant reactors.

Well, I've never thought governments were competent enough to manage large conspiracies. Except for the Roswell incident, as the U.S. gov't did a nice job covering that one up. (Okay, I'm just joking, no need to send the men in black out to visit me, I believe the cover story!!) I don't think the Japanese government can prevent independent measuring of radiation.

Speaking of that, what I am pretty sure of is that I should worry more about the CT scans I receive (I've had SIX in the past year and a half!!!) than the background radiation in Tokyo. Check out this graph, you can click on it to make it bigger.

You can see the orange dots are measurements from Tokyo during this crisis. About the same or lower than Denver (Denver's altitude gives it a high natural exposure rate, here's the article that explains this chart--these folks are not nuclear physicists, I know, but they explain it well).

Look at the white circles, those are the medical procedures. CT scans are pretty high up there. In the past year and a half, it's like I've been working in a nuke plant for 6 years, given my six CT scans. Or, if I had been a smoker for 6 years. Radiation is cumulative, so exposure builds up over time. Ugh.

I had my miso soup for breakfast, by the way. With kelp.

Will the Fukishama plant go Chernobyl? Highly unlikely. It is and will be a terrible disaster for years to come, but, knock on wood, it should not explode like Chernobyl. Unless the Japanese government is hiding something from us....

You can google all these subjects yourself. You'll find opinions all over the map. Internet is too full.

Saturday, April 2, 2011

WTF, Sheboygan?

I was just about to recycle my latest Froedtert Cancer Clinic magazine (I had my first surgery at Froedtert, an excellent facility with first class doctors), but I thought I'd best thumb through it and see wazzup with cancer.

And guess what--the magazine featured a profile of a Sheboygan resident. Suffering from abdominal pains last April 2010, she was diagnosed with cervical cancer. She sought a second opinion at Froedtert (no details of where her first diagnosis was) and they said "hmmm...this is not something that started in the cervix or ovaries...something weird here, let's see." After surgery to remove several tumors, yep, you guessed it. Appendix cancer. Signet ring cell.

She had the HIPEC treatment after that. I'm going to call her and meet her.

Many thoughts in my head--another initial misdiagnosis, nice catch by the great folks at Froedtert, and good work by Dr. Sam Pappas and the others down there in Milwaukee (it is great that they are building an expertise in this area). Of course, wow, more Sheboygan. That is four Sheboyganites I know who have fought this disease in the past 6 years.

It's an under-diagnosed disease. If any of you know any women diagnosed with ovarian or cervical cancer, insist that they have their doctor look for signs of appendix cancer. And anyone that has colon cancer that doesn't seem to act like like "normal" colon cancer should consider whether appendix cancer is the culprit.

Tuesday, March 22, 2011

"A snowstorm whipping through my soul, wailing like a hundred jackals."

Hey, 2 posts in one day! It's because I'm in a hotel traveling for work.

Dr. Leonid Rogozov. A doctor, a Soviet Russian Antarctic explorer in the Sean-Connery-as-James-Bond era (1961), and one tough mofo. Not a bad writer, either, he's like a Dr. Zhivago.

This is a relevant post because this guy could do his own appendix removal, that's why. And you know me and appendixes. Could he have HIPECed himself too? From the Atlantic Magazine:

In 1961, Rogozov was stationed at a newly constructed Russian base in Antarctica. The 12 men inside were cut off from the outside world by the polar winter by March of that year. In April, the 27-year-old Rogozov began to feel ill, very ill. His symptoms were classic: he had acute appendicitis. "He knew that if he was to survive he had to undergo an operation," the British Medical Journal recounted. "But he was in the frontier conditions of a newly founded Antarctic colony on the brink of the polar night. Transportation was impossible. Flying was out of the question, because of the snowstorms. And there was one further problem: he was the only physician on the base." There was no question that he'd have to operate. The pain was intolerable and he knew he was getting worse. He recorded his thoughts in his journal:
I did not sleep at all last night. It hurts like the devil! A snowstorm whipping through my soul, wailing like a hundred jackals. Still no obvious symptoms that perforation is imminent, but an oppressive feeling of foreboding hangs over me ... This is it ... I have to think through the only possible way out: to operate on myself ... It's almost impossible ... but I can't just fold my arms and give up.
Operating mostly by feeling around, Rogozov worked for an hour and 45 minutes, cutting himself open and removing the appendix. The men he'd chosen as assistants watched as the "calm and focused" doctor completed the operation, resting every five minutes for a few seconds as he battled vertigo and weakness. He recalled the operation in a journal entry:
I worked without gloves. It was hard to see. The mirror helps, but it also hinders -- after all, it's showing things backwards. I work mainly by touch. The bleeding is quite heavy, but I take my time -- I try to work surely. Opening the peritoneum, I injured the blind gut and had to sew it up. Suddenly it flashed through my mind: there are more injuries here and I didn't notice them ... I grow weaker and weaker, my head starts to spin. Every 4-5 minutes I rest for 20-25 seconds. Finally, here it is, the cursed appendage! With horror I notice the dark stain at its base. That means just a day longer and it would have burst and ...
At the worst moment of removing the appendix I flagged: my heart seized up and noticeably slowed; my hands felt like rubber. Well, I thought, it's going to end badly. And all that was left was removing the appendix ... And then I realised that, basically, I was already saved.

Actual photo of the surgery! Leonid was back on regular duty in two weeks. He died in St. Petersburg, in 2000, at the age of 66.


I haven't checked in a while, but last week this blog saw hit number 20,000. Almost a year and a half in existence. Even these guys don't believe it.

My stat counter tracks cities--the 20,000th hit was from Huntsville, Alabama. Hello, Hunstville! Portland, Maine, and Elk River, Minnesota, were the almost winners....

Thanks for the hits. Send good vibes to my friend Paul--Dr. Fournier is operating on him tomorrow morning.

Sunday, March 6, 2011


I haven't posted in a while, but I just wanted to say (for those that I don't talk to frequently, or those strangers that find or have found this site and read it occasionally) that it's because I'm busy, and just don't have much to update about PMP right now....

All is fine great health-wise, I'm super busy at work (which is also great, as I love my job), and I'm just as busy outside of work! I'm having a great time and all that, but in reality I cannot wait for spring. It's too icy outside to run this morning, so I might force myself to use my elliptical trainer. Once spring breaks, I've got a lot planned already--sailing, camping, running, and a few getaways. Heading to Japan next month again too. And I've got a ticket sitting on Southwest, I may use that for a beach visit this month, a long weekend.

So, hope you are all doing well. Newbies who find this site, send me an email if you want to talk!

Some quick pics. My friend and co-worker Ken flew us up to Green Bay for a meeting. On the way back we circled our campus.

(One final note--a few weeks ago, in order to explain my surgery to a new patient who found me through this blog, I reviewed my post-operative report. I hadn't really thought about this stuff in any depth for a while, and reviewing that report and the details of the treatment reminded me of what a lucky, lucky person I am, and how poorly things could have gone under different circumstances, timing, etc. Holy sh*t. I am one lucky dude and will never forget that! Screw the ice--the sun is shining, and I'm heading out for a run.)

Monday, January 17, 2011

Latest tests...

Last week's Houston trip was a success. Blood work, x-rays, and scans all clear, no evidence of cancer. Except the big scars, right?

There wasn't an immediate rush of relief when I saw the doctor. Well, maybe a little one, but then it takes a few days for it to really sink in. And visiting M.D. Anderson brings back lots of memories. It is a comforting place, but still, it brings you back to some scary times. And you worry about all the people you see and talk to there....

But you can't live like you are sick when the doctor tells you that you are healthy. So you process it and move on, and ease into a comfortable spot with it all. After a few days, I feel calm now, at ease with it. Made a healthy dinner last night, built a nice fire, a little wine, and just relaxed. Pretty good deal.

So, one year down, 40 or 50 to go. I think this gets easier as time goes on....

It's just starting to snow out there, we might get 5" over the next 24 hours. It's very peaceful and pretty outside. Drive careful!



Saturday, January 8, 2011

One year later....

One year since my surgery. Time flies, that's for sure. Houston next week.

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Location:Michigan Ave,Sheboygan,United States