Good News :-)

An entirely appropriate Halloween blog

According to the latest statistics available from the Center for Disease Control (2003 figures, released 4/19/06) , I'm going to live to least age 45. Or at least, I'm not going to die of cancer before age 45. Only 2,478 people a year die from "Malignant neoplasms of [the] trachea, bronchus and lung." I'm more likely to have an Acute myocardial infarction (3094 deaths/year), Chronic liver disease and cirrhosis) 3020 deaths/year), die in a car accident (6961 deaths/year) suicide (6602 deaths/year), accidental poisoning and exposure to noxious substances (6230 deaths/ year) and homicide (3110 deaths/year) than I am to die from lung cancer.

My friend Aaron, age 27, is even more likely to make it to age 35. Only 154 people per year in his age bracket die of "Malignant neoplasms of the trachea, bronchus and lung." In fact he is far more likely to die of diabetes (657 deaths/year in his age bracket), any number of heart diseases, pneumonia (360 deaths/year), boat/airplane accidents (243 deaths/year), falls (watch your step!) (285 deaths per year), drowning (356 deaths/ year), and "accidental exposure to smoke fire and flames." (252 deaths/year)

For those of you with the same twisted sense of humor as me, you can check it out yourself here:

http://www.cdc.gov/nchs/data/nvsr/nvsr54/nvsr54_13.pdf

The stats start on page 30.

Last chemo treatment today. I'm not looking forward to it. I've been coughing up brown shit for a week.

And now for something completely different:

I went to a political rally for Chet Culver yesterday (he's running for governor in Iowa) be cause the topic of the day was stem cell research and Michael J. Fox was speaking. He was pretty funny (even though he appeared to be in rough shape) but I really didn't learn anything. It was first and foremost a political rally. I have some more interesting stuff on stem cell research I'll try to get posted before next Tuesday in case any of you are undecided on who you're voting for.

Go Irish

A Thriller in South Bend

About the only upside to this whole being on disability/terminal illness thing is you get to say "screw it" and start doing a s many of the things you always wanted to do in life as you can. One thing I always wanted to see was a Notre Dame football game. My friend Bruce gave me a birthday gift of two tickets and his chauffeur services for the weekend, and so my older son Joe and I went to the game.

Once my new oncology found out I was going he invited us to his tailgate (He went to N.D. as an undergrad and is a season ticketholder). I mentioned that if he had an extra ticket, we could use one. Lo and behold, the good doctor called Friday night with an extra ticket for Bruce. Joe went swimming at the hotel while I watched.

On Saturday, we went to campus early and all bundled up for what we expected to be a cold and rainy day Joe had on his N.D. jersey. The campus is beautiful. We saw the "Touchdown Jesus" on the library and Joe got his picture taken in front of it. We then we to the Eck Center hoping to get a campus tour, but they don't give them on football weekends despite what the website says. Joe wanted (and we purchased) a book from some old (Class of '44) N.D. alum who was hawking his book inside the center. He autographed the book for Joe , and then we went next door to the bookstore. It was an absolute zoo, but Joe found an instant camera and a "fan pack" (pennant, bumper sticker, and pin) for himself, and rather selflessly picked out a very cool green #83 jersey for his little brother. (More on that later.) We did get Joe a stocking cap for the game, too.

Coming out of the bookstore, we ran into the cheerleaders and the N.D. Leprechaun. Joe got his picture taken with the latter. On our way to the doctor's tailgate spot, the pep band and the Irish Guard came by. We got closeups of both. At the tailgate, we were introduced to the doctor's family members, other friends, and his fiancee's family. They were all very nice people and the two of the doctor's future brothers in law took Joe to meet the team coming out of Mass. Joe got to high five Brady Quinn (the QB) which had to be quite a thrill for him. At the tailgate, I took a shot of Crown Royal, from my Grandfather O'Brien's flask and said a silent prayer for him in the direction of Touchdown Jesus which was visible from our tailgating spot. Grandpa O'Brien, prior to his death in 2004, had advised Joe to go to college at N.D. After awhile, nature called so to speak. The doctor advised us to go to the second floor of the Joyce Center, where there were absolutely no lines. No lines for the bathroom on a football Saturday??!! Now that's a doctor who can inspire confidence in his abilities! :-)

We then went to the game where a lackluster N.D. team who could not run the ball (35 carries, 41 yards) got the ball back on their own 20 yard line with 1:02 to play and zero timeouts, trailing 17-13. The people behind us (who had been bitching about head Coach Charlie Weis the whole game), left after the Irish turned the ball over on downs with 2:25 left to play. I joked to the person next to me that "they must be (Los Angeles) Dodger fans, too." After two complete passes to the UCLA 45 yard line, Quinn hit #83 Jeff Samardzija (pronounced "sa-mar-ja") who broke off his route and ran a 15 yard flag inside, broke two tackles, and stumbled on his way to the end zone. He scored with 27 seconds to play. Final score: Notre Dame 20, UCLA 17. So Joe was omniscient enough to get his brother the star player's jersey in the very cool green color.

All in all, a great weekend.

Vote!

Stem Cell Research

I am doing something I've never done before. I'm asking you to vote based this November based upon your Senators and Representatives Votes for or against House Resolution 810 (Stem Cell Research Enhancement Act of 2005). As you may be aware, President Bush recently vetoed the bill that had easily Passed in both the house and the Senate. The Bill passed the House 238-194 and the Senate 63-37.

This is a serious issue.
"Lung cancer is expected to kill 162,000 Americans in 2006. Nearly 19,000 people will be diagnosed with brain tumors and nearly 13,000 will die from them, while ovarian cancer will kill more than 15,000 women this year."http://virtualtrials.com/news3.cfm?item=3651 That's a city the size of Des Moines dying every year, folks from just those three kinds of cancer. I think government statistics put the total from all cancer deaths at about 250,000 annually, but I don't have a link handy for that.

I recommend that you educate yourself on the stem cell issue by reading the following article recently published in the New England Journal of Medicine: http://content.nejm.org/cgi/content/full/355/12/1189?query=TOC

Here is the text of the bill:

http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=109_cong_bills&docid=f:h810enr.txt.pdf


Everyone from the ultra-liberal Diane Feinstein to arch-conservative Trent Lott voted for the bill. Unfortunately, President Bush vetoed the bill basically citing three things:

1. Human Embryos are sacred and shoudn't be used for research.
2. That adult stem cells offer as much promise as embryonic stem cells.
3. That embronic stem cells have not shown much, if any promise.

To which the answers are:

1. The fertility clinics are currently throwing the unused embyros in the garbage. That proves life is sacred??!!
2 and 3. Read the New England Journal Article for a refutation of these arguments.

Here are the links for how each member of Congress voted:

http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=109&session=2&vote=00206

http://clerk.house.gov/evs/2005/roll204.xml

In Iowa, we do not have a Senate race this year (although for future reference Harkin voted for H.R. 810 and Grassley voted against it). Otherwise, in Iowa, its a straight party line vote with the Democrats in favor of H.R. 810 and Republicans against it. This includes the seat vacated by Jim Nussle (who voted against H.R. 810) with Democrat Bruce Braley in favor of H.R. 810 and Republican Mike Whalen stating that the veto of H.R. 810 was proper and that he doesn't believe in government funding of reasearch. Caveat: You should check on how your own representatives and senators voted on H.R. 810. As stated above, several Republicans did vote for H.R. 810 so if you're not in Iowa, you need to check for yourself on how he or she voted.

In all likelihood, anything that develops from this research will be too late to save me, but with 250,000 this deaths a year, this issue will affect everyone at some point in their life. While I've never been a one issue voter in the past, I believe that this issue is important enough to change my self imposed "vote for the best candidate" policy. Thank you for taking the time to read this.

Tom

The Joys of Chemo, Part II

My Cancer Story
I had forgotten about the nasty little itchy rash that appears about three days after chemo. I've been taking Benadryl to kill the itch, and it seems to help somewhat. The rash goes all the way around my waist on my upper chest and back, and this time I have a few spots on my legs as well. Aaahhh, Chemotherapy, let me count the ways I hate thee.

links

Links

• Google News


• Where's my p53


• Alicia's Story

The Joys of Chemotherapy

My Cancer Story

Ah, chemotherapy....It's hard to imagine that just 940mg of carboplatin and 360 mg of taxol could bring so much pleasure. Whether it's sleeplessness, hair falling out everywhere, acne all over my back, or just general malaise, this has been a real treat. Took my taxes up to my accountant the other day, and he told me that when his mother was undergoing chemo (she has since passed away), they took a family trip to Minnesota, and while everyone else was being eaten alive by mosquitoes, they wouldn't touch his mother. See the comments regarding "medicine" below.

My joints are hurting today. Took the sleeping pills my Rx prescribed and actually have had back to back nights of decent sleep. Haven't had any glow in the dark butterflies in my sleep yet, though. Having friends over for dinner tonight. I'm going to get back on my regimen of killing those little bastard cancer cells my way: with Crown Royal.

As an aside, I'm giving up for now on trying to figure out how to work the links thing on the left of this page. Please go see my friend Aaron's site at:

http://wheresmyp53.blogspot.com/

He is 27 years old, a recent law school grad (God help him) and has the same kind of lung cancer I do. Please check it out.

Plagarizing myself plagarizing Pink Floyd

Was pumped of chemo yesterday. Feel like shit. Still need to do my taxes. What's passing for semi-insightful commentary today is a comment I made on another blog a couple of days ago. Without further ado my comments on time left to live:

You're right. Everyone with cancer thinks about it. Whenever I think about it, I am always always reminded of the lyrics from Pink Floyd's Time:


Ticking away the moments that make up a a dull day

you fritter and and waste the moments in an offhand way

Kicking around on a piece of ground in your hometown,

Waiting for someone or something to show you the way.

Tired of lying in the sunshine staying home to watch the rain,

You are young and life is long and there is time to kill to today

And then one day you find ten years have got behind you

No one told you when to run, you missed the starting gun.

There always to be too much time when youre young and too little as you grow older. Cancer teaches you to priortize in a hurry.

I Hate Cancer- Speak

I am neither a "victim" nor a "survivor." Victimhood is for whiners and say what you will about me, I am not a whiner. A bitcher maybe, but not a whiner. Survivors are for events of human action or inaction whether intentional such as wars or Nazi death camps or unintentional events such as auto accidents. So far as I know, nobody passed the cancer bug onto me, so I am not a survivor of anything. This leads us directly into the next term I hate, which is "cure."

The doctors, no matter learned in their specialty or subspecialty will not "cure" me. When you are talking about cancer, living five years (after diagnosis, not after treatment begins, so as to inflate the Rx's self-congratulatory studies) is considered "cured." Of course, just like George Orwell's Animal Farm, some cancers are more equal than others, and therefore if I make it to May 10, 2008, (two years after diagnosis of lung cancer) I am cured of lung cancer. Doesn't
really matter if I buy the farm the next day, I've been cured, dammit.

Giving you "medicine." Any doctor, nurse or anyone else who says this ought to be smacked. It's poison you're giving me, and you and I both know it. There's a reason you're standing on one side of the six inch thick lead door and I'm on the other. There's a reason humans who abuse every other substance known to man, natural or man made, aren't stealing carboplatin from hospitals. I understand the theory that maybe this stuff will kill the cancer before I die of poisoning, but don't insult my intelligence and call it "medicine."

Things to be Thankful For

After my rant the other day, it occurred to me that I probably sound like an ingrate because a people have done a ton of nice things for me as detailed below. I am sure I've left out a number of people and things, but at the risk of offending the people I've inevitably left out, here goes nothing:

I am thankful for my wife Melissa whose incredible inner strength has allowed me to make it through 68 radiation treatments and a bunch of chemo treaments . I could never make it without you, Hon. I promise the next decade will be better. :-)

I am thankful for my two boys for being respectful, polite and helping out when we need them to.

Thanks to Bandstra, Bellus, Carpenter, and Dinkin for getting me out to lunch/beer once in a while.

Thanks to my parents for watching the kids when Melissa and I can't find a sitter. Thanks to my mother in law Shirley, for the same.

Thanks to Megan for the same and for calling me every once in a while.

Thanks to the Halseys, Jacquez's, Dornackers, Carpenter's, and Bellus' just for being good friends.

Thanks for everyone that gave us food and/or gift certificates when I was going through radiation. It helps a lot.

To Mom and Dad for not offerring advice on medical decisions and for pointing out that although the average lifespan of a lung cancer patient may be 12-18 months from diagnosis, the Clarkes have always been above average in everything.

To Blake and Kathy for offering to let us stay at their home every time we're in Chicago.

To people at the City who donated sick/vacation time to me and who still include me in their lunch plans.

To everyone who has helped cart our kids around.

I know that I've omitted numerous people and the things they have done.

Thank you.

Stupid Shit That People Say

I realize that people are often shocked by the news that you have cancer, but the following advice (unless solicted by the person) and platitudes should be avoided , becuase they don't help and tend to piss the person with cancer off. Without further ado, here's a partial list of actual comments to me and my wife:

1. "It's God's Will," or it's close cousin "everything happens for a reason." These seem to be favorites amongst the holy roller crowd. Response: Did you ever consider that God missed and tagged the wrong fucking guy? Is that so inconceivable with five billion people roaming the planet?? Did God make you fat and stupid for a reason or do you just eat too much and not study in school?

2. "You have to take it one day at a time." I decided to take it three days at a time, thank you very much, you dope addled AA/NA freak.

3. "God never gives you more than you can handle." Oh yeah, why are there so many suicides then? Also see #1 above.

4. "My ___________ (mom, sister, grandparent, friend, etc. ) had ____________ cancer and he/she decided to undergo radiation/chemo and is just fine now." Well, that solves it. I guess I'll just depend on your mom's (sister's, etc.) judgment on what I should do for my more serious and completely different cancer. Bruce, who is one of my best friends, actually told me in 2002 that he thought I should undergo brain radiation because his uncle had undergone radiation (for testicular cancer) and it had worked for him. I told Bruce that as much as I appreciated the comparison of my brain to his uncle's balls, I had decided to defer radiation.

5. Offers to help. Don't make them unless you intend to follow through. I actually had one friend who called me about 45 minutes before I was scheduled for an oncologist appointment (which he had agreed to take me to 2 weeks earlier) and asked me to reschedule the appointment because he was busy at work. "Uh, yeah, I'll get right on that. It's not like time is of the essence or anything." Offer to do what you can, get me out of the house for a lunch or a beer, but don't offer to do things (like mow my lawn, for another example) if you're not going to follow through. It makes more work for me and my family than had you not offered in the first place.

6. "You don't look like you have cancer." There's a special circle of Hell for these people (and yet you know that they have never heard of, much less read Dante's Inferno). What exactly am I supposed to like? The less offensive version of this is "you look good." While it's nice to hear if you're feeling okay, but if you feel like shit it takes on the air of the old skit on SNL "You look mahvelous" (by Billy Crystal I think). Ask how I'm feeling first, and then comment if the situation warrants it.

7 . "Come on down." Well, people don't really say this, but I swear every every waiting room in America has that goddamned The Price Is Right blaring at about 120 decibels even though no one is watching it. If you ever read a headline that Bob Barker and Johnny What'shisname (the announcer) have been murdered, my picture will be right next to the article. No jury will ever convict me.

Catching up

It's been about a week since I last wrote. Taking the Claritin that Dr. Heddinger suggested took care of the rash after about five days. I went and saw the U of I get their heads handed to them on Saturday by Ohio State, but we had a good time. My wife, Mom and Dad, sister Megan, brother in law Blake and his son, as well as my friend Bruce that I share tickets with, his sister, brother in law, and father all tailgated. We parked in the handicapped lot which is literally 20 feet from Kinnick stadium. I've been busy working on my 2005 taxes (I filed an extension) because the previous radiation (68 treatments this year) and chemo treatments have not afforded me the time or willpower to file yet. I've planned a trip to Ireland for my wife and I, and two other couples for February. That has also kept me busy. I'll begin writing more after taxes are done.