Faking It: Part 1

[Ed:  Long, rambling, pscyhoanalysis.  Maybe it will be interesting.  Maybe not.  But this is your warning.]

Back in law school (way back when), I took a class called "Faking It."  It was one of my favorite classes in law school, primarily because it had nothing to do with the law. The course description:

What I am after is the myriad circumstances in which we are not quite sure we are sufficiently immersed in the roles we are playing. You smile politely at a person you loathe, you feign interest in whining complaints of your friends, you go through all the moves of grieving, being in love, etc, etc and are still not sure all of you is there; you feel, in other words, that you are acting, playing a role... No, you don't feel this way all the time, but you fear the feeling when it comes, because you feel it might blow your cover. And there are times when you wonder who or what you are amidst all the various roles you are asked to play, from mourner, to lover, to barely competent lawyer...I want to discuss issues ranging variously among hypocrisy, politeness, courtship, apology, flattery, praise, self-deception, ritual observance, propriety and emotion display.

You have to love a law school course with the express goal of examining the role of "barely competent lawyer."

We spent a lot of time discussing common, recognizable social phenomenons:  The way your eyes dart around for another partner in conversation when you're trapped in a boring or undesirable with a particular person at a bar or party; the way we signal our desire to end phone calls; the anxiety associated with approaching a six-seat table with five of your friends and not wanting to get stuck surrounded by the more uninteresting people in the group.

We spent some time discussing emotions, and how the propriety of an emotion depends on three things:  the correct emotion, at the correct time, in the correct degree.  Excitement at a funeral is not appropriate.  Grief is acceptable at a funeral; not so much at a baseball game.  Getting a bad grade in a class is mildly disappointing, but not exactly worthy of screaming and crying.  And we often judge the propriety of emotions by what we would expect to feel in a similar situation.

And we discussed the issue of "performing."  The (really meta) issue of whether there is such a thing as your true "self," or if you're just a bundle of performances layered on top of one another.

The explicit goal of the professor was to make us all "self-conscious wrecks."  My final paper (entitled "I Won't Put a Title on a Paper with No Subject, with a Kanye West quote as a subhead) concluded that while I wasn't exactly a self-conscious wreck, I was exponentially more self-aware, and the course had pretty much destroyed my capacity for self-delusion. 

And then I was diagnosed with cancer.  Then I became a self-conscious wreck. 

***

The most difficult question for me to contemplate during cancer was this:  Was I really the person I was on this blog, or was it all just a performance?  Was I really ok, or was I just pretending that I was ok to keep up a strong face for my audience, my friends, and my family?  I alluded to this in October:

But I've always believed that the real test for me is not how I act around other people or how I write on this blog.  Those things can be faked.  I could put on a great performance.  The real test for me is how I deal with this when I'm alone, lying in bed, stuffed in a PET Scan machine, sitting around watching TV when there's nobody around.  No audience. 

At the time, I gave this answer:

That stuff just does not bother me.  That's one of the things that has really stunned me about this whole experience.  I don't know if I'm denial or just being delusional...I just know that sometimes, I sit there and try to make myself feel bad just for kicks, and then I go on and tell that part of me to STFU and go somewhere else for a few months because I am busy and I don't need his negativity right now.

One week later, I would head up to U-M hospital.  Two weeks later, there would be questions about my treatment.  Three weeks later, I would have a second diagnosis.  And then a third.  Two months later, I'd be "done" with treatment, but I would have five doctors attempting to answer one question that could land me in the hospital for another two months.  I answered the question at the time.  But I asked it to myself every single day for four months.

***

I mentioned above that in judging the propriety of another's emotion, one tends to use their own emotions as a guide.  For example, when a police officer testifies about how a wife reacted upon hearing that her husband was killed, he's using his own emotions as a baseline - how was he react to the loss of a spouse.

Well...that doesn't really apply in this case.  I'm sure it's very, very difficult for many of you to empathize with me.  How on earth are you supposed to judge my emotions when you have absolutely nothing to compare my situation to?

It's the same way for me.  If you're 80, you've probably seen several of your peers deal with cancer, and you have some idea how the process goes.  Me...I'm flying blind.  I have no idea how this is done.  I have no clue what I'm supposed to feel like.  Talking to older cancer patients doesn't help.  Reading books doesn't help.  The internet is a horrible idea for cancer patients.  And so on.

The bottom line is that nobody has any clue what the "proper" way to respond to this is.  And there probably isn't a "proper" way to do this.  That's why I started this blog:  The experience is very unique, actually rather interesting, and I thought it might make for good content.  On top of that, it helped me organize my thoughts and emotions into something more usable than the jumbled mess inside my head. 

The upshot of this is that nobody - including myself - knows if I'm being true or putting on a performance here.  There's a lack of data.  There's no baseline.  I have no idea if I'm supposed to be scared as hell and I'm just overlooking something, or if it's very common to project strength, or if this is really no big deal, and so on.  How the hell should I know?  How should you know?  We're all in the dark.  So it's quite reasonable to think that while I project an air of confidence and strength and grace (or whatever else you want to call it) here, I'm actually a mess behind the scenes.  I wondered the exact same thing.  Was I a member of my audience of a show in which I was the sole actor?  How would I know?

***

The toughest thing was this:  looking at all of you.  As I wrote in October:

Sometimes, certain things precipitate it.  Like Facebook photo albums of somebody's awesome bar trip, a vacation, or a night at the bar.  Or hearing about people moving to and getting settled in a new city.  Or hearing people complain about a hangover, or having to work late, or their "rough day."

And this from August:

But you add a whole new element when you are surrounded by literally hundreds of people who don't have to deal with I have to deal with.  They don't have to worry about their appointment with a radiation oncologist on Monday, they don't have to carry nausea pills in their pocket, any pain they will feel the next day will be self-induced, and they can engage in whatever cancer-causing activities they wish because odds are overwhelming that it won't catch up with them anytime soon.

As a cancer patient, being surrounded by your able-bodied friends is like watching somebody dump a plate of food into the trash while you're starving.

I continue to believe that anybody who plays the "I never once asked 'Why me?'" card is full of crap.  Maybe if you're 93 and everyone you know has passed on and you've lived a long and fulfilling life.  But not at 25.  You don't walk amongst thousands upon thousands of people who don't have to deal with your daily, universe-imposed but wholly undeserved struggle and not stop for a second and ask, "Why?" 

But I know there's no answer.  I know I'm Kent Dorfman asking the universe, "Why Flounder?", as it belches back "Why not?"  I know it, but it's not very satisfying.

And it was times like this when I really wondered.  When I really wondered if I was ok.  If you can handle getting smacked with something that had a .00001% chance of happening and not think that God had you in his crosshairs. 

***

All of that bothered me to the point where I really spent a lot of time wondering if I was really ok, or if it was all just an act I was putting on for myself and others.

This brings up one of the central questions I discussed in my final paper:  Whether there is any concept of a true "self" or whether we are always acting, always putting on a show for our audience, even if there's only one member of that audience: ourselves.  When I wrote that paper, I really didn't expect to be in a situation where I would debate that very issue every single day.

I did reach some sort of conclusion in that paper:

I believe the “presentation of self” is simply a combination of our immutable characteristics – largely subconscious – and our conscious effort to put on the correct façade in a particular situation.  The people that we describe as “true to themselves” are those who more often exert their immutable characteristics.  Those we describe as “fake” are those who too obvious in their acting. 

And here's what I wrote while analyzing myself:

Of course, members of all of the above groups would probably use similar words to describe me.  I am, for example, a cynic.  I like to call myself a realist...I do not do well around optimists; especially blind optimists.  I believe one of the few people I can rely on is myself – and even he isn’t that reliable...I am relentlessly sarcastic.  This irritates other people at times; it is a source of pride for me.

So this was the opportunity to test this hypothesis:  Was I truly ok with all this, or was I projecting?

***

And I really, honestly, believe I'm ok.  And here's why:  I think most people who know me would agree that this blog is very..."me."  It is still, at its heart, a cancer blog.  But I don't think it resembles a typical "cancer blog" in any way, shape or form.  Maybe you're surprised at the degree to which I've openly discussed my feelings on the internet for the past four months, but I think this thing is probably what you would have expected if you said, "If Nick Cheolas gets cancer, what would his cancer blog look like?"  I don't know why you'd be asking yourself questions, but fantasize with me for a moment.

It's the reason I receive messages like this:

I'm enjoying the blog, the tone is definitely you

And this:

First off I have to say you might be the only person who can make me laugh and cry simultaneously.

And conversations like this appear when my blog is mentioned on other places on the internet:

Cheolas is a seriously good guy, and his blog is very funny. Hope he gets back to normal ASAP.

Cheolas has never been normal. But I do hope he gets healthy fast.

There was a time way back when when I might have been offended by this stuff.  The "never been normal" thing.  The words "asshole" or "smartass" used to describe me.  But then I stopped.  Because I realized 1) those were true statements and 2) If they were true in a negative sense - if I was really truly an asshole - then the friends that used those words to describe me wouldn't be my friends.  And these are many of the same people who have said some of the kindest words imaginable over the last few months.     

Anyway, all this here...it isn't an act.  It's not a performance.  I crack jokes around here and screw around because that's what I do.  I crack jokes during treatment all the time.  On more than one occasion, I've made comments that have put everyone else in the room in that awkward, "A cancer patient just made a really morbid joke.  Should we laugh?" position.  I do make people laugh and cry because I'm somebody who likes to make people laugh who has suffered something that is pretty cry-worthy.  My realism leads to my frequent snapping at optimists and people who tell me to "stay positive" or people who admire my "positive attitude."  And the "toughness" with which I've handled this crap - or whatever you want to call it - is part Napoleon complex (except I think my handicap is real, not imagined), part competitiveness.

Basically, you can tell it's me writing.  I mean, I certainly didn't expect to be in this position - proprietor of the Internet's Most Popular Cancer Blog (I'm just running with that title now) - but in the end, this whole thing shouldn't really surprise anybody.  It seems like you could have guessed this would be a reasonable outcome if I was ever diagnosed with cancer. 

***

In that paper, I concluded that:

These characteristics are always with me.  What varies greatly is the way in which they manifest themselves in various scenarios.

And that, I think, is what you have here.  And that's what also finally convinced me that I was going to beat this and endure this just fine.  Because I couldn't fake all those posts and all those words I wrote.  You can only write fake crap for so long.  You can get away with feigned bullshit if you only have to write weekly, 700-word columns with one-sentence paragraphs and three-word sentences.  You can't write as much as I have if it's not true.  At some point, you'll run out of stuff or blow your cover.

So all the stuff you've seen here - the sarcasm, the humor, the emotion, the complexity, and so on - that wasn't made up.  And likewise, the "I'm OK" sentiment displayed here wasn't made up.  Believe me, I tried like hell to convince myself that I was scared, that I was angry at the universe, that I wasn't ok with what happened to me, that I wouldn't be able to handle everyone else running around just fine while I was sitting in doctor's offices discussing "survival rates" and losing my hair.  And while there's a little bit of truth to those things, those aren't my predominant feelings.  I'm more in the, "Shit happens.  Deal with it camp."  Because you know...shit happens.  And you have to deal with it. 

And this is how I deal with it.  If I was running around here talking about how blessed I am and how I don't think about relapse toxicity and all that bad stuff, well then I would be lying to you and myself.  If I wrote about how I'm not bothered by the "more treatment" issue, how I was waiting for God to show me the right answer, and how I wasn't thinking about any of the negative stuff, I would be lying.  There's nothing wrong with any of those things, it just wouldn't be me, and it wouldn't reflect the way I chose to handle all this.  If I was doing that stuff, then I'd be concerned that I was just putting on a show and repressing the things I really wanted to feel. 

***

Many of you know about five stages of grief: Denial - Anger - Bargaining - Depression - Acceptance. I consider myself - rightly or wrongly - a bit too cerebral for the whole thing.  I was never in "denial," so to speak.  There was a pathology report that said "you have cancer" (I'm paraphrasing).  I guess I was angry, but that sort of dies out when you realize you don't have a target.  I'm not even sure what bargaining means.  And I certainly wasn't depressed.

But I really do agree that "acceptance" is the final stage.  And I think Elisabeth Kubler-Ross had it right:

Kübler-Ross claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two. Often, people will experience several stages in a "roller coaster" effect—switching between two or more stages, returning to one or more several times before working through it.

Significantly, people experiencing (or caretakers observing) the stages should not force the process. The grief process is highly personal and should not be rushed, nor lengthened, on the basis of an individual's imposed time frame or opinion. One should merely be aware that the stages will be worked through and the ultimate stage of "Acceptance" will be reached.

What I've been struggling with these past few months is figuring out whether I'm actually there.  And my conclusion is that yes, I am there, and I've been there since about August 5th, when I first starting telling people about my diagnosis.  There was no big "process" for me.  No ongoing battle to get to "acceptance."  It was just, "you have cancer, now go get rid of it."  And that was that. 

***

So this whole thing - everything you've seen here - is just me being me.  Some of you have seen law school Nick, or high school Nick, or professional Nick, or family Nick and so on.  But now all of you have seen cancer Nick, which is a title I don't really care for, but one I have to live with.  It's the combination of characteristics you've all seen over the years with a situation you (and I) never expected.  But it's still me.  And I've come to accept that.

There is, however, one thing I'm not quite sure I can explain...

The politics of cancer

[Back to the reader question series.  I've had a couple of these sitting in the queue for about a month.  But other things came up.  Anyway, I'll post the rest over the next couple weeks.]

Has your diagnosis changed any of your political views?

I already think I talk about politics too much on a cancer blog, but it's my blog, so the only person who could possibly hear my complaint is me, and I decided I didn't care.  So things will continue.  Plus, assuming most people are various shades of "conservative" or "liberal," I'm pretty sure I piss off half the people half the time.  So I keep things balanced.

That said, I think there are three political issues that my cancer has affected.  And I wouldn't say my diagnosis has changed my views on any issue, only solidified my previously-held views.  In short, I'm probably more uncompromising on these issues than I was six months ago.  I'll discuss each issue in turn:

Physician Assisted Suicide.  Morbid, huh?  I've been staunchly in favor of PAS since high school for no particular reason.  It's always been my pet issue, although I really haven't discussed it in recent years.  I think it stems from watching a lot of Jack Kevorkian TV coverage as a kid.  Parents probably should have invested in the V-Chip or something, but whatever.  

But the deal is I now spend a lot of time inside oncology treatment rooms, and that's not a place many people get to see before the age of 60 or so.  And there are a lot of people in these rooms who have cancer.  And everyone has a different type, in a different stage, with a different prognosis.  The bottom line: sometimes people get to a point where their illness is terminal, there's nothing more doctors can do, they are in an immense amount of pain, and their quality of life has been reduced to a point where they feel it is no longer worth living.  I don't think the government, you, me, or public policy should stand in the way of such a person finding a doctor who helps them end things peacefully and on their terms.  I think that's the ultimate form of autonomy.  And having been in a position where I do see people with terminal forms of cancer going through very debilitating treatments, I don't feel right supporting any sort of policy that prevents them from finding a doctor to end their suffering. 

Whether or not doctors should be involved in this and what safeguards should be in place is another issue.  I comment only on the government prohibiting consenting patient A from finding consenting doctor B to end patient A's life peacefully. 

Medicinal Marijuana.  We can leave the argument about marijuana in general for another day, although for the record, if you oppose the decriminalization of marijuana and you have ever smoked marijuana in your life, I will not debate the issue with you until you march yourself down to the closest police station and turn yourself in for criminal prosecution.  When you're done serving your sentence, or paying your fine, or doing your community service, or completing your "drug abuse" classes, then we can talk. 

As for medicinal marijuana, I have now been a position where I have had both horrific nausea and a loss of appetite.  The former is terrible, and the latter is a real problem because prolonged loss of appetite (or nausea for that matter) can cause problems with nutrient intake, and that can start the downward spiral I have referenced in earlier posts.  

So if somebody is dealing with these symptoms - which I know from first hand experience to be horrible - and the pills don't work, but pot does, what in god's name is accomplished by arresting and prosecuting these people? 

I'm fortunate.  I haven't had to deal with these symptoms very often, and when I have, my pills have been effective.  But for many people, pills don't work.  And if pot does, how on earth can I support a policy that literally puts them in jail for doing something to alleviate their own pain?  I guess you could say, "well there are other more effective treatments for their symptoms."  To which I would respond with an invitation to come down to the treatment room with me next time, take a catheter in your arm, and do a little R-CHOP with me. I get really irritated when people try to lecture me about how I'm feeling, or tell me how to feel, or how to deal with how I feel.  So I'm not going to support laws that do the exact same thing.

Stem Cell Research.  I really don't understand all the intricacies of the stem cell research issue, so I don't like to opine on the topic.  But I think I know a couple things: 1) Doctors and researchers are pretty enthusiastic about the potential of stem cell research, and 2) much of the opposition to stem cell research is moral and religious. 

So I'm trying to learn more about the issue, and that led me to this article in the Detroit News last month.  Apparently, U-M created Michigan's first embryonic stem cell line.  This development "thrilled" supporters and "dismayed" opponents.  I get why it thrilled supporters.  But why did it dismay opponents?

"This means one human being lost his or her life," said Pamela Sherstad, spokeswoman for Right to Life of Michigan. "To sacrifice human life for the hope of helping others is not the right direction for research. Every human life is deserving of our respect and deserving of the right to life. We were all embryos."

Dear Lord, I thought.  A human being was "sacrificed" to create this stem cell line?  That's horrible!  Human sacrifice in the name of "science?"  That was some real Nazi Germany shit.  So I scoured the article to find the part where a human being was actually killed to create this stem cell line.

Fortunately, the Detroit News article explained why research is so controversial:

Human embryonic stem cell research is contentious because it relies on embryos created for infertile couples in a fertility lab. The fertility process joins male and female reproductive cells in a Petri dish and typically creates more embryos than can be used to help the couple bear a child. 

Extra embryos created during the process are frozen and thawed when the couple wants to try to have another baby. When a couple is finished building a family, they must decide what to do with any leftover embryos, which cost hundreds of dollars annually to store. Some couples donate them to another infertile couple. Some let the embryos thaw and expire, then dispose of them as medical waste. 

Others donate their leftovers to science, which is how U-M was able to create its first embryonic stem cell line. 

Couldn't really figure out what on earth was objectionable there, so I did some Googling.  "Opposition to stem cell research" produced this Washington Post article, which gave me this:

 "I believe that a human embryo is worthy of legal protection," said state Sen. Matt Bartle (R), who vows to press the fight...

..."We oppose embryonic stem cell research because it destroys the embryo," said Fichter of Missouri Right to Life. "They're trying to define human life by its geography. It doesn't make any difference if it's in a petri dish, implanted in the womb or in a nursery. A human life is a human life. Are we going to say a 4-year-old is more human than a 2-year-old?" 

Dear god now they are killing 2 and 4 year olds!

But I was unable to find, in any article, where a human being was murdered in the name of stem cell research.  So I was forced to conclude that the opposition to stem cell research was based on an astonishingly high level of concern for stuff in a petri dish.  Like, a higher level of concern for the stuff in the petri dish than most of these people show for actual, living humans.  

So now, as a cancer patient, I have no choice but to disregard those concerns.  I don't think there's any doubt that a significant number of researchers and doctors think that stem cell research may hold some promise for cancer treatment.  To me, that's a huge deal.  So if we're going to ban or curtail that research, there better be a damn good reason to do so.  And I looked - I really did.  The above stuff is not a joke.  I didn't know much about the issue so I actually Googled it and spent a decent amount of time poking around.  I really wanted to understand the opposition.  But all I could find were quotes from Right to Life folks talking about "destroying human life."  Like this op-ed in the Detroit Free Press:

By what other measures should Proposal 2 be evaluated? By far the greatest objection of opponents of Proposal 2 was that, believing life begins at conception, the destruction of each human embryo was the loss of another human being at his or her earliest beginnings. 

Come on guys.  If this belief is religious in nature, that's fine.  But we're not enshrining religious beliefs as public policy.  So...stop.  And if it's just a belief, well that's fine too.  But you're not on very solid ground there.  And your not-on-solid-ground-belief has a real impact on real people.  You can't argue this stuff in the abstract.  And I have better things to do than argue with people who believe that every time I go to the sperm bank its a mini Hiroshima.

So that's where I'm at with stem cell research.  It's the issue on which my diagnosis has had the greatest impact.  If scientists and doctors think this stuff has the potential to cure or mitigate some pretty terrible diseases, well that's good enough for me.  I know the value of anything that could potentially mean one less day in that treatment chair.  And if that's the case, you have to make a pretty strong argument that stem cell research should be outlawed.  Not just that it's a bad idea, not just that it's ineffective, not that it shouldn't be paid for with tax money, or that the benefits aren't as great as they seem.  But that it should be prohibited by law.  To the point where people that attempt to engage in it should be put into prison.

I haven't been able to find that.  And as somebody who is going to have to live with this disease for the rest of my life, you have to understand that if you support prohibiting research that people far more knowledgeable than you believe holds the potential to cure my disease - however small that potential may be - because of something you believe because you 1) read it in a book or 2) just believe it, I kinda sorta don't care for you very much.

Meeting with Dr. Li: The case for more treatment

I was wondering whether my follow-up meeting with Dr. Li was going to be useful. I knew what U-M's recommendation was, I knew their general reasoning, and I knew that none of that was going to change.

But the meeting was extremely productive.  For starters, Dr. Li is the third straight doctor that has sat with me for about an hour and answered every single question I (and my mother.  Mostly the mother) asked.  She wasn't looking at her watch or taking phone calls or hurrying me along.  This has been my experience with all three of my doctors so far.  I'm not sure if that's abnormal or what - from what I gather from the horror stores about doctors, I guess it is.  But as a patient, you can't really ask for more from your doctors than what I've been given.

(Also of note:  On Friday night, I went to the Wings-Canadiens game at the Joe (one of the best pro sporting events I've seen live, by the way).  Anyway, Dr. Li is a native of China; English is her second language.  And her English was far superior to the gibberish those goddamn Hosers that crawled into our country were spitting out all night.  So there). 

While we talked for an hour, the issue basically boils down to this:  Dr. Li and Dr. Kaminski (chair of the lymphoma group at U-M) think my chance of relapsing is higher than Dr. Anderson and Dr. Al-Katib.  Because of this, they think that more treatment will provide a greater benefit, and therefore, the extra treatment is worth it.  That's really the entire issue: what is the benefit of more treatment.  Everyone agrees that more treatment would increase the chances that I stay in remission; the dispute is over how big that increase will be.

I asked Dr. Li an interesting question:  Whether it would be safe to say that nobody else in the world has ever been faced with this particular question, given my rare type of lymphoma and my particular course of treatment.  She said that was probably true.  This is true for several reasons:  1) My type of lymphoma is exceptionally rare; there are really only a handful of cases in the recorded literature; 2)  Nobody can find a case of a person with my type of lymphoma being treated with R-CHOP; 3)  It's relatively rare for lymphoma patients to receive both less and more intense treatment regimens. 

The upshot is that everybody is pretty much guessing when the issue their recommendations.  They are very educated guesses, of course.  But Dr. Li fully admitted as much - U-M might be dead wrong, my chances of being cured now might be significantly higher, and my other doctors might be right.  Had I had a clear-cut case of Burkitt's, my doctors would be in agreement.  Instead, I have a rare subset of Burkitt's (according to the NIH), marked by good prognosis, and a whole host of things working in my favor (health, age, response to treatment, stage, location of tumor, etc).  Everybody takes all these factors into account.  But nobody knows what the precise outcome will be.

Most of my mother's questions revovled around the specifics of "more treatment."  This is an important issue, to be sure, but it's less of an issue for me.  In my view, if more treatment is the best way to go, it's the best way to go regardless of what it entails.  It's not like I'm going to turn down the best medical option because it's going to be difficult.

Anyway, this type of treatment would be particularly horrible.  I would undergo two cycles of what is called IVAC.  Normally, Burkitt's patients will undergo a regimen called CODOX-M/IVAC.  They'll receive two doses of the CODOX-M, and two of the IVAC.  But because many of the drugs in R-CHOP are contained in the CODOX regimen, I would only do the IVAC part.

This is very intense stuff.  If R-CHOP was a 7.5 out of 10 on the scale of chemo drugs, IVAC is a 9.5 out of 10.  It beats the hell out of you.  I would likely feel many of the same effects as I did during R-CHOP, but they would be more severe.  The hair would fall out again.  I'd deal with nausea and such.  My blood counts would plummet.  And so on.

Each cycle (I would undergo two) would require about three weeks of hospitalization.  The chemo drugs are administered over a period of several days, and U-M has patients stay in the hospital until their blood counts recover (some hospitals allow patients to go home and recover).  After the first cycle, I would recover for a couple weeks, then head back to the hospital for cycle 2.  The entire process would be pretty debilitating, and the extended periods of hospitalization would mean I regress significantly from where I'm at now (obviously) and my lack of an immune system would probably mean my contact with other humans would be limited.  In short, these would not be fun times. 

However, one of my main concerns was additional long-term toxicity.  Dr. Li indicated that long-term toxicity was not significant with the IVAC drugs.  While they can certainly provoke acute reaction (like all drugs), they don't carry the long term effects of Adrimycin (that red drug) or radiation.  This is a huge deal to me - I can handle getting my ass kicked for two months.  I'm not as interested in going through hell just to grow a third arm in 15 years.   

Also big deals to me:  There is no risk on waiting until after the new year to do additional treatment, and going chemo-radiation-chemo is no big deal (and fairly routine).  The latter was a moderate concern of mine, and the former means I'll be able to enjoy the rest of December, even as this question looms over me.  It certainly means I have the time to consult multiple sources to figure out the best answer.

I asked a number of questions about the main issue: the cost-benefit analysis.  I really just want to know what my various doctors think about the benefit of more treatment, so I asked Dr. Li if more treatment would boost my chances of staying in remission from 50% to 90%, or from 90% to 95%.  Of course, she said, "Somewhere in the middle."  But upon further prodding, she threw out the chance of me being cured (and by "cured" I mean in remission and staying in remission) right now, at this moment, at 80%.  More treatment, she added, would bump that number to 95% or above.

That's really the type of analysis I'm looking for.  I know these numbers are pulled out of thin air and are all shots in the dark.  But if you think about it in verbal terms, it's like saying Doctor A thinks more treatment will bump your cure chance from "good" to "very great," while Doctor B thinks you will go from "great" to "very great."

We also discussed the ramifications of relapse.  In short - also not fun.  I won't get into details here, but to summarize, we're talking about various forms of transplants with very non-zero mortality rates.  We don't want to be talking about these things.  But the relevancy to this issue is this: the difference between a 7% and 17% relapse rate can be pretty significant if the consequences of being wrong are significant. 

Dr. Li (and U-M's) position is that we should get it now.  The best shot at cancer is the first shot.  If you catch it early, have good prognostic factors, and are responding well to treatment, the argument is:  let's do what we have to do now and be done with it.  The biggest question is to figure out what "we have to do."  There's no right answer here.

Dr. Li concluded by saying that she would treat her own brother with the more intensive chemo (presumably because she doesn't have children).  Dr. Al-Katib, if you remember, told me that he would treat his own son with less intensive chemo.  Perhaps I should try to figure out whether Dr. Li loves her brother more than Dr. Al-Katib loves his son.  Seems that might be easier than trying to figure out the real question.

If the government names something the People Mover, you can be damn sure it moves no people

Round and round and round it goes.  Where it ends up, NOOOOOBODY KNOWS. Except it's gonna cost your financially decimated city $12 million a year. 

On Friday night, I rode the Detroit People Mover.  I hadn't been on the thing for at least a decade; it was my friend's inaugural trip on the Mover. 

The People Mover - for those of you non-Detroiters - is a 3 mile elevated train that runs in a loop around Downtown Detroit.  It moves nobody from nowhere to nowhere.  It...is an absolute disaster.  I can't even explain how much of a disaster it is, so I'm just going to block-quote from Wikipedia, which is huge but so unintentionally funny that I couldn't really edit it down. 

The Detroit People Mover has its origins in 1966, with Congressional creation of the Urban Mass Transportation Administration (UMTA) to develop new types of transit. In 1975, following the failure to produce any large-scale results and increased pressure to show results, UMTA created the Downtown People Mover Program (DPM) and sponsored a nationwide competition that offered federal funds to cover much of the cost of planning and construction of such a system. Selecting proposals from four cities, the UMTA recommended that Detroit, Miami, and Baltimore be permitted to construct systems, but only if they could do so with existing grants. Though two of the four selected cities ultimately withdrew from the program, Miami and Detroit persevered to build theirs.

The People Mover was intended to be the downtown distributor for a proposed city and metro-wide light rail transit system for Detroit in the early 1980s; however, funding was scaled back.At the time of planning, the system was projected to have a ridership of 67,700 daily.

The system opened in 1987 using the same technology as Vancouver's SkyTrain and Toronto's Scarborough RT line. In the first year, an average of 11,000 riders used the People Mover each day; the one-day record was 54,648.

When the People Mover opened, it traditionally ran counter-clockwise. In August 2008, the system changed direction and is now running clockwise permanently, although it can run in both directions when necessary. The change to clockwise meant that trains were faster.

The Detroit People Mover is designed to accommodate up to 15 million riders a year. In 2008, it served over 2 million riders. In fiscal year 1999-2000, the city spent $3.00 for every $0.50 rider fare, according to The Detroit News...As of 2008, the system moved about 7,500 people per day, about 2.5 percent of its capacity of 288,000. The Mover costs about $12 million annually.

Here's that in a nutshell:  Congress spawned some acronym-laden commission.  It did nothing for a decade, but probably cost money.  Then the acronym commission created another acronym commission, and decided to have a competition to give away more money.  Apparently, DC needed to give you the thumbs up before you build a train in your city.  Fortunately, Detroit was "permitted" to build a system.  It - like virtually every government transportation system known to man - was built to serve a bajillion more people than actually ride the damn thing.  The one-day record for ridership is 13,000 riders short of the projected average daily ridership.  It basically carries people to and from hockey, football, and baseball games, inflating its actual ridership numbers.  Otherwise, these people would just walk from their cars to the games, and we wouldn't be the fattest city in America every year.  The city loses $2.50 for every trip on the Mover.  It runs at 2.5% of its capacity.  BUT IT CAN CHANGE DIRECTIONS MOTHERF-----!!!

They should have named the damn thing the "Medicare Mover" or the "Social Security Shuffle."  Then it would have exceeded its annual projected ridership by 500%. 

The People Mover is simultaneously one of the funniest and saddest parts of Detroit.  The experience might have been blog-worthy in and of itself.  We attempted to get to the Greektown station through one door, which we found was locked.  We ended up walking through another building and following a small crowd to get to the platform.  It costs 50 cents to ride the people mover.  Since nobody on earth owns a People Mover card, and you can't use dollars in the machines, there's a massive line of people stuck at a quarters machine attempting to break up dollars to use for the trip.  Before you even get on the thing, it's a perfect example of what you would imagine "public transportation in Detroit" to be.

As the thing dragged me along some giant, looping path to where I wanted to be, I thought to myself, "Hey, you know what would be awesome?  If they made a straight version of the People Mover that could also take you from nowhere to nowhere, and that nobody would ever ride, but that cost like 30 times more."

And BOOM, it was done!

Q: When does construction begin?

A: Light rail on Woodward will be implemented as a single project built in two phases. While a final schedule has yet to be developed, construction is anticipated to begin in 2011 on the first phase with the full system up and operational by 2016. The two phases are:

             1st Phase: Downtown Detroit to West Grand Boulevard

    * This phase is approximately 3.4 miles and will be advanced as expeditiously as possible with the necessary federal approvals.

             2nd Phase: West Grand Boulevard to Eight Mile Road

    * Utilizing the same vehicles and maintenance facility as Phase 1, this portion of the project will complete Detroit’s initial light rail project and set the stage for future growth of the regional system.

Q: How much will the Woodward Light Rail project cost?

A: The cost of the project will be determined during the Preliminary Engineering (PE) phase and is dependent on the final alignment, station locations and number, as well as the final cost of materials which are constantly fluctuating. For planning purposes, a range of $450 - $500 million is currently being used.

You've all heard about 8 Mile, right?  The title of Eminem's famous movie. The "barrier" between black Detroit and the white 'burbs.

Well apparently, that barrier is so damn strong that $500 million CAN'T GET YOU OUT OF THE CITY OF DETROIT. 

By the way, if this thing is up and running by 2016 and costs under $500 million, who's joining me in a shoe-eating contest?  Also, the People Mover was designed to "set the stage for future growth of the regional system." 

Which leads me to this thing.  It's an editorial from today's Detroit Free Press. 

Brief aside:  I dabbled in journalism in college, but I always made fun of college newspaper editorials because they were always so...simple.  Really, really simple pieces with elementary arguments, like "We are school.  We like dollars.  More money education" or "Government should protect (insert favorite group of the week here)" or "equality now!!!!"  And damn do these people love trains.  My theory is that this love affair begain during that semester abroad they spent in Prague or Barcelona or London or wherever it was they were in Europe.  But in any event, these people lovvvvvvvve trains.

Anyway, major newspaper editorials are just grown-up versions of the editorials these people wrote for their college newspapers.  I'm amazed at how terrible they continue to be.  The same reasoning - "We like X, spend money on it," or "We don't like Y.  Ban it" - in every piece.  And always, always begging for the federal government to do something (as if these people were Men In Black flashy-thinged right after GWB left office and forgot how much they hated the government for most of this decade).

The Freep's complaint is this:  Michigan was given a $150 million grant to build some railroad, and Michigan hasn't yet set aside the required matching funds, and therefore, might lose the money.  Freep's solution:

It's an ominous portent for the road ahead -- if Michigan doesn't find a better way to fund state transportation needs. Yes, that effort must include improving efficiency and working to get a fair share of dollars from Washington. But unless Michigan wants to watch hundreds of millions of dollars of federal grants fly to other states, it also means an overdue increase in the state gas tax.

We need a "better" way to fund things.  Little hint for you, Freep folks:  Government can fund things in one way, and one way only:  taking money from its citizens.  So write that.  Plain and clear.  If you think your goals are so awesome that they need to be paid for, write that.  Also, "fair" share of dollars and "overdue" increase in gas tax are really funny.  What's the "fair" share?  Whatever we say it is!  Why is a gas tax hike overdue?  Because we say it is!  A sure sign that whoever writes these things has never had any of his or her ideas or beliefs challenged.

Also, "ominous portent?"  Freshman English class called.  They want their thesaurus back. 

And this made me LOL:

Even the $150 million the federal government committed would have enabled Michigan to prepare roughly 60 miles of track for high-speed service. That would have cut commute times in the 280-mile corridor between Detroit and Chicago by about 15 minutes, giving Amtrak and the state an improvement to promote.

The Free Press just endorsed spending $150 million for 15 minutes.  I have no goddamn clue what on earth costs $10 million a minute, but I'm absolutely sure it isn't legal.  

Finally, the crux of the issue:

Now, unless the next Legislature acts quickly, or the Department of Transportation finds another way to secure the local match of about $35 million, more than $160 million will hit the road to other states. Gov.-elect Rick Snyder must make sure that doesn't happen.

More broadly, Snyder must show far more leadership than his predecessor in finding a way to pay for a transportation system that will help put Michigan's economy in overdrive.

Newspaper editorial checklist:  Plea for government action?  Check.  Plea for government to spend money on stuff you like?  Check.  Appeal to an individual politician?  Check.  Completely omit the word "tax" and instead include "finding a way to pay," as if the government is going to hold a bake sale?  Check.

I share views with both sides of the spectrum, but man, what a terrible ideology this is.  There's not even a argument as to why any of this is a good idea.  It's just, "The government wants to piss away hundreds of millions of dollars.  We're upset that we can't join the pissing contest."

Finally, this "matching fund" thing is pretty awful, especially with a poor state like Michigan.  It's a lot like telling a homeless guy on the street, "Hey, I've got this $100 bill for you.  But I'm not giving it to you until you can produce a $20, and even then, you can't spend the money on food.  You have to spend it on solar panels."  I mean, who does this stuff?  It's downright mean.  And now they're doing this - and the Free Press is cheering them on - while holding the state hostage until we find money for a train from Kalamazoo to Dearborn (because in all that time I've spent in Dearborn this year, the #1 complaint I heard was, "Damn, I wish there was some way I could get to Kalamazoo"). 

And even better, they dangle this $150 million in front of us so we can siphon off some money from road (you know, those things that everybody uses) repair, which, according to the Detroit News, is in dire straits:

MDOT is predicting funding losses of $120 million to $160 million per year from 2012 to 2015. If it can't come up with matching funds, it could mean the loss of $575 million to $800 million in federal funds for each of those years.

"That will mean not fixing 600 bridges, the cancellation/postponement of 180 road projects covering 385 miles of roads. Plus, we will cancel maintenance projects slated for more than 600 miles of roads," MDOT's Shreck said. "In 2011, our budget will provide 15,800 construction jobs; but in 2012, that will drop to under 8,000 every year until at least 2015."

Of course, bridge collapse was what the government had us freaking out about/spending money on in 2007, so that's old news now.  Now trains are cool!

Just a lot of rambling thoughts produced by a ride on the People Mover.  Probably the most productive thing the People Mover has done since 1987.

When are you moving to DC?

The most frequently asked question these days:  "When are you moving to Washington?"  Of course, like many things in my life right now, I don't have an answer to that.

Here's the best I can do:  Sometime between January and April 2011.  It all depends on whether I decide to do more treatment or not.  If I don't do more treatment, I'm heading out there the first week of January and I'll start work the second week of January.  If I end up doing more treatment, I could be in the hospital until March or so, and the it becomes a matter of how quickly I recover from the chemo.  Since it will be very intense chemotherapy, it could be a while before I'm up and running again.

Of course, all of this raises the question of whether I'll do more treatment.  I'll have a lot more on that issue later today - especially after the meeting with Dr. Li on Friday.

But from now until the end of the year, I'm just going to live a relatively normal life.  I'm almost definitely in complete remission now (and probably have been for a while), and waiting another month or so won't have any real effect on the usefulness of more treatment.  For now, my focus will be on 1) getting our place settled in DC, 2) enjoying the holidays and 3) figuring out this more treatment issue .

For what it's worth - and I'll elaborate more on this later - I think the whole thing rests in the hands of what the docs at Sloan-Kettering and Stanford say.  The way I feel now, if one of those docs recommends doing more treatment, that's what I'm doing.  If they both say I'm good to go, then to DC I shall go.

It's a really interesting (and horrible) decision actually.  As I've mentioned before, there is no "test" that I can take to determine whether or not I will need more treatment.  No doctor will tell me, "You need more treatment."  It is entirely my call, but will depend on the information I get from my various doctors.  In short, it depends on how much doctors think my chances of being "cured" (staying in remission) will be increased by doing more treatment.  If there's a large enough benefit, then it makes sense to do more treatment.  If the benefit won't be that great, then there's not much of a point.

Unfortunately, everybody is pretty much taking stabs in the dark here.  I have an odd type of lymphoma, I've been treated with a relatively new drug, and I'm younger than most cancer patients.  Each factor injects more uncertainty into the equation.

Nonetheless, I'm pretty comfortable with where I'm at right now, especially after meeting with Dr. Li on Friday.  Uncertainty has been greatly reduced.  I'll get on with things for the rest of the year, talk with my other doctors, and whatever decision I make, I'll go with it.  And that will be that.