Thursday, April 29, 2010

New Normal Cliche.

My cancer is gone or hiding. Weird. Sometimes I feel like my cancer experience did not warrant the range of emotions I experienced, or continue to experience. I didn't go through months of repeated chemo. I don't have stage IV anything. But I have or had a very rare, strange, and serious form of malignant cancer that was caught early. Thanks to extensive surgery and a unique chemotherapy treatment, it may be gone. Maybe it wasn't the seventh circle of hell, but it was my experience, my health, and my hell, and months of it. (Yes, I know it affected my family, kids, and friends too.) I've expressed my guilty feelings about my cancer experience before, which stems in part from the fact that I know people in far worse shape. Countless books have been written about survivor guilt. So I'll note that feeling for now and move on.

So, back to normal! And as people in my circle say, "Well, at least back to the NEW normal, right?"

What is the "new normal"? Sometimes I think that phrase is just a way to get people to accept cruddy circumstances and lousy changes. "Hey, it's normal. The NEW normal." And normal can't be bad, right? So if what seems bad is called normal, then it's not bad, by definition. It's just normal.

It's like a coffee shop that has three cup sizes, but they are medium, large, and extra large. If you want the middle-sized coffee, you have to order their "large." It's not medium, it's large! It's not bad, it's normal! You just shift everything one category over, up, or down. It's so American, like grade inflation and vanity sizes. Change the definitions to make us feel better.

Same with cancer. You recalibrate, and set new expectations based on your shifted landscape, and call your medium cup "small" so you can feel like it will runneth over with goodness faster. (You mix a lot of metaphors, too, apparently.)

Maybe that's okay, though, if it helps you cope. Maybe it helps you find a new point of view, a perspective that you missed.

(Image from, click on it for the venti version.)

But, dang it, I refuse to accept "cruddy" as my new "normal." No, I want a really big cup of way-above-normal. Hell, I want the plenta, it's like drinking from a KFC bucket.

One more thing I want to change. (Only one more, Dan?) It's funny how I always say "my" cancer, like in the first line of this post. Well, maybe funny isn't the right word. But I want to remember not to say "my" cancer from now on. It's not mine and I don't want it.

Where's Dan?

Working! Sorry!

Friday, April 23, 2010

Link to a longer story about Prekkie...

The Most Excellent Prekkie

"ANOTHER inspirational chapter in the story of Steve Prescott’s fearless battle with terminal cancer will unfold over three days in London this week. Steve, surrounded by his wife, Linzi and their two boys, will be receiving a richly deserved MBE at Buckingham Palace on Friday. Then, to further underline his steely determination, the former Saints full back will pound the streets of the capital on Sunday in the London Marathon, gunning to beat the time he recorded two years ago. The 36-year-old is being honoured with the MBE for his services to rugby league and his colossal efforts for charity over the past three years...." Full story HERE
Steve Prescott, as I've mentioned before, is a former UK rugby player who has PMP. By all accounts a good dude (though neither a cowboy nor slacker), and is a celebrity of some sort in the UK. 
For the unsophisticated among my readers (or as the British call them, "Americans") MBE is the designation for Most Excellent Order of the British Empire, Member. "Member" is the basic, lowest status, but still really good. The top two categories, Knight Grand Cross (GBE) or Dame Grand Cross (GBE), and Knight Commander (KBE) or Dame Commander (DBE), confer automatic knighthood. (Yes, I had to look that up.) Prekkie could become a knight, eventually. 

Thursday, April 15, 2010

Now I get it...

"Like part of a cosmic Russian doll, our universe may be nested inside a black hole that is itself part of a larger universe. In turn, all the black holes found so far in our universe—from the microscopic to the supermassive—may be doorways into alternate realities...."

Full article HERE.

And here's a video showing what it would look like to go into a black hole. "What's that, Grandma? Go into the light?"

I just took rat poison.

Heard this story from my doctor the other day. In the early part of the 20th century, cows were unexplainably bleeding to death in Wisconsin. It turns out they were eating mouldy sweet clover, and that was causing the hemorrhaging. In the 1930s, researchers at the University of Wisconsin isolated the agent in the mouldy clover that was responsible for the bleeding. Warfarin was the result (better known under its brand name Coumadin). The WARF in warfarin stands for the Wisconsin Alumni Research Foundation, the University of Wisconsin organization that makes gazillions of dollars from warfarin.

The first use of warfarin was as rodent pesticide. It was used to kill rats.

After an army recruit tried to commit suicide by ingesting large amounts of rat poison in the early 1950s and survived, warfarin was tested as a therapeutic anticoagulant, and approved in 1954 for that use in humans. President Eisenhower was one of the earliest recipients of the drug, after a heart attack.

You never know where beneficial medicines may come from....

Wednesday, April 14, 2010

It's a Start

Running. Managed a "sprint" mile at about a 9 minute pace, which used to be an easy jog....

Still pitiful. Going home to take rat poison.

- Posted using BlogPress from my iPhone

Location:Broughton Dr,Sheboygan,United States

Saturday, April 10, 2010

Start of 2010 Firepit Season

- Posted using BlogPress from my iPhone

Location:Michigan Ave,Sheboygan,United States

Thursday, April 8, 2010

The Details....

I just got to the hotel bar to type up this post, and the band is playing "Girl from Ipanema." It's like my cancer experience song. No magic xylophone this time, though.

As mentioned previously, I met with Dr. Fournier this afternoon.

Number one and most important, absolutely no sign of cancer. Clean. I take nothing for granted, though, as those of us "in the know" understand that PMP could reappear at any time, which would mean a tiny bit was hiding somewhere in my gut. But I'm not going to invite it back, you know? There are no guarantees in life, hell, I could get hit by a bus tomorrow. But for now and the foreseeable future, this kicks ass. Talk about feeling like you were treading water for a while... I feel my feet touching solid ground again.

My bloodwork was great, tumor markers and everything, all cool. Normal. It took a while for that to sink in, believe me. But I feel so damn good now. What a strange feeling. Don't fight it, Dan. The only bad thing in my belly right now is the Chick-fil-A I had for lunch. Ish. Back to eating healthy right now.

I did stop to think about my other friends with this disease, and those I know who have other forms of cancer, and I wish them so much good will and strength. I can't help but feel some guilt for feeling good right now, knowing the battles that others face. I've met so many good and strong people during this adventure, including the patients, and in particular their loved ones who stand by them and support them. I respect them all. They provided so much help and emotional support when I was totally lost and trying to figure this all out, I can never thank them enough. I hope to help others find their way, too. And to my friends who follow this blog and/or who have been calling, texting, and emailing to check in on me, thank you so much.

One complication--I have blood clots in both lungs (albeit the one in the right lung is very tiny). The severe pain I was having in my right calf a few weeks ago may have been related to the blood clots. Treatable, though. I have to give myself injections of a blood thinning agent, into my belly, for 10 days. Piece of cake. After that, 3 months of cumadin (another blood thinning drug) and weekly blood tests. Then back to Houston in July for follow up tests (for both cancer and blood clots). I don't want to end up with one of those filters installed next to my heart, which is what they'll do if the blood clots don't clear up. But I'll worry about that when/if I have to....

I have to buy an electric razor, though. Seriously. They said no shaving with a blade, as I'll bleed very easily if cut. I've always been a blade man, this will be the suckiest part. I don't give a damn right now about giving myself injections into my belly, but I hate electric razors.

Here's the cool mini hazardous waste container they gave me for my syringes. I'm going to use an empty plastic bottle instead, and keep this on my desk at work. You know, for memos and stuff.

Thank you, universe.


This is the view from flat on my back in a park here in Houston. Just relaxing. CT scans and bloodwork were clear, no cancer. I haven't felt this good in a long, long time. It's an unfamiliar sensation. I'm going to rest here for a while and soak it in. Details later.

- Posted using BlogPress from my iPhone

Wednesday, April 7, 2010

Wiley Gipp

Nine hours at the hospital yesterday, most of it spent waiting. Blood draws, x-rays, CT scans. It's hard to get frustrated at the wait, the staff is so polite and apologetic. And they are doing important work--take as long as necessary to get it right, folks. It doesn't bother me, it takes more than that. I didn't have anywhere to be that day, anyway. Most patients don't seem to get annoyed, only a few.

Wiley Gipp (his real name) was a little frustrated as we waited in the CT check-in area, but even he was polite about it. He had a big Texas accent and a big black cowboy hat, tight jeans, an honest to goodness cowboy shirt (you know, with the bold curly stitching and pockets with snaps) and cowboy boots. Small belt buckle. No, just kidding--a huge belt buckle with some big piece of stone on it. Wiley Gipp. Freaking awesome name for a cowboy. Wirey, strong looking dude, he probably could have kicked my ass. I'd bet he was about 65 years old, or a young 70. He liked the umbrella in my banana barium drink.

I have noticed that some Texans have no volume control on their voice. Only "off" or "10." Probably unfair to limit that to Texans.

As usual, I spent most of my waiting time yesterday watching other people, like Wiley Gipp. Very few younger (42 or below, let's say) people. One young guy sleeping with his headphones and facemask on (repressed immune system). There was a perky mom helping her young kid with homework over the phone--and she was so incessantly upbeat when she was talking to her own mom that it kind of bugged me. Aren't you taking this seriously? But she was one of those types riding through the cancer storm on the back of magical unicorn of happiness. Yes, I'm jealous. But good for her. Another younger woman, probably in her 30s, looked terrified. That didn't make me feel any better. I wanted to go comfort her. But I didn't think it would have been appropriate, I'm not sure how to do that with strangers. An older woman did that for me when I first came to MD Anderson, I should pass that on at some point. And then there was a 30-ish hippie/slacker looking guy with long hair reading a book about Buddhism. Good middle path, dude. ("Dude" works for both cowboys and hippie/slackers, by the way. Think about it. I call it the Jeff Bridges Rule.)

As you might expect, lots of very old and very sick people. As horrible as it sounds, you can't help but at least wonder--at a certain age, it is worth the fight? Of course it depends on the age, the level of fight, the quality of life, and THAT PERSON'S WISHES. But I'm pretty sure it is worth the fight until it obviously isn't--that old loud dude (another cowboy, not a hippie) in the wheelchair next to Wiley Gipp is a living, sentient being, with thoughts, memories, family, all the other things that make him human. Should he give up just because he's very old and a treatment might gain him 6 months only? His call, not mine, nor anyone else's. I support whatever he decides. How can anyone answer that question unless you are in that wheelchair? Who wouldn't want 6 more months? And what if it is too painful for him and he is just tired of the fight? That's why I was so disgusted with Republicans making up shit about death panels just for political gain on the health care reform issue. Bastards. It's a serious subject.

I also listened to people compare cancers, which is ordinarily fascinating. Four of us were waiting in a small room for our x-rays, wearing our gowns, and two were comparing. Those two left for their x-rays, and the silence after that was uncomfortable. So, I asked the other remaining man what he was in for.... I thought maybe I was being impolite if I didn't ask about his well-being when stuck together in such a small space. I mean, it's obvious we both have cancer issues. I asked if he was still being diagnosed or here getting treatment. He said he had pancreatic cancer, and all they were doing is checking its progress, and he's not receiving treatment for it. Well, that was awkward. What the fuck am I supposed to say after that? This guy is just here to find out how much longer he has to live. My x-ray turn came up, and I wished him well and told him to hang in there. He just said, "Yep." I failed that test. I should have asked him about the damn Astros.

Yes, a kind of depressing post, but yesterday was a long day at the cancer carnival.

Eating dinner now. Some oil and gas company (Chevron, I think?) is having a conference at this hotel, so I get to watch them all get drunk and hit on their female co-workers. Of course, I shared some drinks with some Chevron dudes at the bar the other night, they are a generous and friendly lot. Some Texan oil dude across the room is set on 10. It's all I can hear. But it's a friendly noise. Takes a lot to really bug me.

Tuesday, April 6, 2010

Barium Sulfate

Ugh. Banana flavored barium sulfate suspension:

Wait a minute...

Fixed it!

Next time I'm bringing rum, too.

- Posted using BlogPress from my iPhone


I am grateful that this place exists, and that I found it.

It's a beautiful day here, my 2 mile walk from the hotel this morning was refreshing. I walked through several parks, everything is blooming....

I'm also grateful for my awesome St. Helens Saints rugby jersey I'm wearing today, it was a gift from my kids. Retired Saints rugby star Steve Prescott is a UK-based PMP survivor and fundraiser.

Got my MDA "badge" on my arm again. Only cost me 4 vials of blood.

- Posted using BlogPress from my iPhone

Monday, April 5, 2010

Cancer City!!

Back in Houston, so soon. The country's 4th largest city, and home of MD Anderson Cancer Center, the country's biggest one of those. Everything is bigger in Texas, you know.

On my first visit here, I listened to Texan oil and gas workers compare cancers. Rough profession.

Flight down was rough and bumpy. I figured out why, but no one believed me.

(I get bored on airplanes, and like to draw using my iPhone. That's a Shatner homage, by the way. With Pixar-like quality.)

- Posted using BlogPress from my iPhone

Sunday, April 4, 2010

There Are No Stupid Questions--Not Even "Why Me?"

I'm experiencing typical nervousness in advance of my first follow up medical tests in Houston this week. I wonder what is going on inside of me. Goo?

Should I wonder why? (In a metaphysical sense, not in a biological cause/effect sense.) That question--why me--finally made it to the front of my brain during my first appointment at the M.D. Anderson Cancer Center in November, 2009. I once typed up some thoughts on that day, pondering the "why me" question. However, I deleted it after I was finished. It didn't really provide any answers, anyway. "Delete" is one of the most powerful but underused buttons on the computer keyboard. 

And yes, I know the standard responses to the "why me" question: "It's a wake up call," "You'll learn to appreciate each day," "You are meant for something different," etc. Those are all fine and good, but still somewhat unsatisfying answers. They just beg the question. Why did I get the wake up call, why was I to learn to appreciate each day, and why am I meant for something different?

Back to my point, and I think I have one somewhere, and I hope it is a better one now that I deleted my first draft response. Why me? Well, why NOT me? I'm just not going to obsess about with looking back at why I got stuck with a poisonous, toxic tumor, it'll drive a person nuts. What's more important right now is, well, right now. I like to read about the physics of time and space. I don't understand it all, but we all know this: From our limited ability to perceive time, that damn clock keeps moving in one direction only and at the same rate (let's not talk about relativity right now, thanks). It doesn't matter what you wonder about or fear or replay in your mind or what you do. 

(Comic from: it.)

You can lose all that time if you aren't careful--and once it's gone, too bad. Here's a link to the blog of another PMPer, Kevin, who made this point just the other day, but with motorcycles:

It's weird to think it was there long before I knew about it, and I guess I should feel lucky that this poisonous growth finally revealed itself, and is now gone. Well, I hope it's gone, I'm pretty sure it's gone, we'll see on Thursday, and three months after that, etc., etc. What if it had been another few years before I figured it out? As long as this happened, I need to remember the positive things too--that I'm relatively lucky, and I'll be better. I'm getting stronger every week. 

So, while I think "why me" is not a question you can actually answer, that does not make it a stupid or useless exercise, I've decided. I hope you can see why. It's just a natural question in trying circumstances, and it's as good a starting point as anything else. If you don't get stuck on it, it might lead you to a really cool kayak ride.... That's what I'm going for....

(P.S. I believe what I just wrote most of the time, which is good.)

Nice Morning

Friday, April 2, 2010

Too early....

After a long walk today, I felt pretty good and thought I'd try a short run. I made it about half a block....

I thought my guts were going to burst out of my scar. Time to find a bicycle for the time being.... Disappointing. 

Finally Spring

Beautiful afternoon. Took Cleo for a long walk along the lake.

Now I'm enjoying the first game of a Lakeland College doubleheader at Wildwood Field here in town. Getting colder as the sun goes down, though.

- Posted using BlogPress from my iPhone

Thursday, April 1, 2010

Those stupid pain charts....

I made fun of these hospital pain assessment charts back here. If you don't recall, here is another picture:

In the past week, some friends emailed me related material. First of all, a very funny blog entry about the writer's boyfriend and his visit to the hospital, and her assessment of the pain chart: click HERE.

Then, just in time for Easter, the following:
I think I have a motif for coloring Easter eggs with the kids this coming weekend....