Taking tattoo advice from Lil' Wayne

A brief update from my bunker, where I've stupidly taken all my communications equipment just to ensure I receive a life-altering message between now and 7pm (I got a letter in the mail from the Maryland State Bar Association today and started hyperventilating, but it was just a message telling me that if I wanted to get an exemption from the professionalism course, it is due on Friday, November 12.  Useful, I know).

Anyway, I spoke with my contact at Sloan-Kettering, and I think we'll be able to make progress.  I told her, quite frankly, that I needed a little bit more than a one-sentence recommendation.  After a month of terribly stressful discussion and debate on this issue, one sentence isn't going to cut it.  She seemed to understand, and told me she would discuss the issue with the doctors there (I'm working with two), and see what we should do.

Complicating the issue is Sloan-Kettering's policy of not meeting with patients during treatment - which means I cannot schedule an appointment until after radiation.  Which is fine, but it just delays the possibility of having a substantive discussion even more, but whatever.  I need to have a face-to-face discussion with a doctor who recommends more treatment before there's any chance of me accepting that recommendation.

For my part, I'm mentally preparing to spend a good chunk of the first quarter of 2011 in the hospital.  That would be horrible, infuriating, upsetting, deflating, and any other similar adjective you can think of.  But I'm trying to deal with it in my mind now so I'm not crushed by it the day before I'm ready to move out to DC for good. Since I've been diagnosed with cancer, it hasn't been terribly difficult to assume the worst about every single thing that happens.  So I figure if I prepare for this now, it won't be as depressing later.  I hope it won't come to that.

PICTURES OF MY BODY:  The reason everybody visits this site in the first place, of course:

Yes, Alex, the picture was taken in your room due to the abundance of mirrors.

These are the things I have on my body at the moment.  The "X's" are not permanent, but the little dot in the middle is.  I asked the RadOnc people if they could make the dots teardrops like Lil' Wayne, but they said they didn't have that capability.  I was disappointed.  I might get the dots turned into teardrops later on, but I'm not sure I've murdered the requisite amount of people. 

Anyway, the X on the bottom is used for positioning (along with a corresponding X on the other side of my body), while the X up top is the midpoint of the blast zone, so to speak.  Afterward, I will tell people the dots are from my time in a cult. 

IT SUCKS THAT THIS IS AN AFTERTHOUGHT RIGHT NOW:  But I completely murdered cycle 6. I had virtually no nausea, barely felt the Prednisone bump, and completely forgot about the bone pain thing until today, when I realized it hadn't shown up.  And I've been feeling "good" since Wednesday.  I felt great today.  

And after discussing things with Dr. Anderson yesterday, it's apparent that my experience with chemotherapy was not typical.  In part that's attributable to my age.  But many lymphoma patients do not make it through chemo without being hospitalized, or at least getting sick.  I mean, your blood and your immune system are complete messes for roughly three months.  So perhaps I can attribute my experience to luck or awesomeness or something.  I don't know. 

More to come when I get a phone call from some doctor telling me that I have Alzheimer's. 

It's Friday so I'm hiding in a bunker until further notice

It's Friday, so I'm scared as hell.  But yesterday was a big day:  Did the radiation simulation in the morning, met with Dr. Anderson, and then got a very uninspiring phone call form Sloan-Kettering.  Discussions in turn:

I AM TATTOOED:  Apparently one of the things that was not discussed in my two prior meetings with the Radiation Oncology people was the fact that they put permanent marks on your body. So I got three tattoos yesterday.  Awesome.

Radiation Oncology is pretty advanced stuff.  They've made it to the point where the radiation beams can be focused to the point where they don't cause much collateral damage (unlike chemo).  This is a good thing.  The bad thing is that the ability to minimize collateral damage depends on keeping the patient in the exact same position during every treatment.

This is done in two main ways:  keeping my arms in some sort of apparatus on the treatment table, and drilling holes into my sides and my chest.  The "tattoos" are actually little dots.  I have three of them:  one on each side of my torso, and one in the "midpoint" of the radiation field.  By lining up laser beams (LASER BEAMS!) with the dots, the RadOnc people ensure that I'm in the same position during every treatment.  Then, computer aims the beams and zaps my tumors.  Piece of cake.

Also, during my simulation, Dr. Kim - previously referred to as a hybrid of Mr. Miyagi and Pai Mei from Kill Bill - just APPEARED in the room.  There were like three RadOnc techs in there at the moment, I was laying on a board chatting with them, and the next thing I know, Dr. Kim is hovering over me announcing that the simulation shall begin.  I think he came out of the vent or something.  He's sneaky.

Anyway, I'm looking at about 15 treatments, 5 days a week (or so), with relatively minimal risk.  All in all, a good deal there.

DR. ANDERSON ACHIEVES CONSENSUS:  Had my final-ish treatment meeting with Dr. Anderson after the simulation, and he was again firm in his recommendation that my current treatment regimen is the way to go.  He took the recommendation back to the Henry Ford tumor board, discussed my case with several other doctors, and apparently they all came to the same conclusion.  I don't know how much this changes my analysis, because...

IT WAS JOHNNY HOPKINS AND SLOAN KETTERING:  The results of the poll were pretty tight, but I ended up calling all four hospitals (MD Anderson, Sloan-Kettering, Mayo Clinic, and Stanford).  I can't get a hold of a human being at Stanford; I've left multiple messages to no avail.  The Mayo Clinic doesn't see patients without an office visit, and I don't feel like doing that.  MD Anderson actually has a pretty simple mail-in review process, but I don't know that it's the best option for my complicated case (it forecloses follow up contact with physicians).

So that leaves Sloan-Kettering, and I actually got somewhere with the people over there this week.  I spoke to a live human at Sloan-Kettering, explained my case, they told me to fax some documents, and I did that at 1:30pm yesterday.

Two hours later, I received a phone call from my contact at Sloan-Kettering:  "We recommend CNS prophylaxis," she said.  And that was it.

Excuse my swearing, but what the fuck was that?

First of all, did the people at Sloan-Kettering take a class in "Breaking Major Life News" from the New York Board of Law Examiners?  I mean, who does that?  Did you anticipate that, as a patient, I might have a question?  Or that you can't just dole out two months of intense chemotherapy like you're giving out Halloween candy?  Sometimes I wonder what the hell people are thinking.

Second, what the hell is "CNS prophylaxis?"  I mean, I know CNS means "Central Nervous System."  And I know what prophylaxis means, but only because I've read enough Justice Scalia Miranda dissents to become familiar with it.  What if I was a normal patient, though, who wasn't familiar with medical terminology?  How the hell do you call somebody and say, "We recommend CNS prophylaxis."  What the $%@ does that mean to me? 

Third, more specifically, there are a number of different things that could constitute CNS prophylaxis.  You couldn't even come up with one?  Or...you know...explain to the patient what the hell your recommendation means to him in real-world terms? 

That phone call sent me through the roof.  It literally gave me nothing.  There were a couple other bits in the phone call, but it was honestly about two minutes long.  I explained - on multiple occasions - that I had a difficult case with conflicting diagnoses and conflicting treatment options, and that there had been a lot of discussion between my doctors so far.  I was of the understanding that they wanted some preliminary information before figuring out the best way to proceed.  I was not expecting a one-sentence recommendation after two hours and a cursory review of some of my medical records.  I can look at a pathology report, see the word "Burkitt's" and then recommend blasting my body with so much chemo that I give myself Leukemia.  But that doesn't do me any f'ing good.  So that's why I contacted one of the "top" cancer centers in the country.  For their expertise.  Not a quick glance, a sentence of a few more weeks an hell, and a "Peace out, homie."   

I still can't get over this whole episode.  I can't even adequately explain the phone call.  I answered, my contact informed me that the doctor I thought I would be dealing with was out of the country, but that another doctor had reviewed my case and "recommended CNS prophylaxis."  That was sort of weird, I thought, two hours after sending my records over and without any additional review or discussion.  And then I realized my contact had the "I'm done with this phone call now" tone in her voice.  And I just froze.  I couldn't believe that anybody in the world would believe that this was the best way to handle this situation.

I think the best way to describe the way I felt after the Sloan-Kettering fiasco is this:  It's as if Mitch Albom mated with the bar application process.  And I'm serious about that:  Mitch Albom, because I felt an enormously complex and detailed case had been distilled down to simple, knee-jerk reaction that answered no questions and left the recipient feeling confused, angry, and uninformed; the bar application process, because I felt like I was talking to somebody who was "just relaying information" from the ambiguous, faceless decision-makers above her, and couldn't give any answers. 

***

My main problem with this whole confusing saga boils down to this:  Dr. Al-Katib told me that "he would treat his own son" the way I am being treated.  I think that's true, and I think that's a very strong statement.  But I don't think it's true of the people at U-M and Sloan-Kettering.  I think they would treat me like that; not necessarily themselves or their children.  It's just really easy to recommend treating through the roof when you don't have much invested in the case.

I'm more concerned because while Dr. Al-Katib and Dr. Anderson have readily acknowledged the drawbacks of their position, U-M has not.  Al-Katib and Anderson readily admit that if the goal is to obtain the lowest possible relapse rate, then we should blast the hell out of things.  But there are two major concerns there:  1) Just how much will we reduce the rate of relapse and 2) What are the additional risks of more treatment.  Al-Katib and Anderson have been very clear that they believe that 1) The rate of relapse in my case is lower because of a number of factors, (early stage, good response to treatment, low risk factors, location of tumor, etc) and thus, more intense chemo wouldn't reduce the rate that much, and 2) More intense chemo raises the risk of toxicity related problems.  It's no use to prevent relapse if you're just going to make my heart explode in 20 years. 

From Sloan-Kettering and, to a lesser extent, U-M, I don't get that.  I get some variation of "it's Burkitt's treat it as Burkitt's" or "CNS prophylaxis just to be safe."  I've never had a full discussion about the drawbacks of more intense chemo, and there's no doubt there are significant drawbacks.  Maybe you feel that the benefits outweigh the risks, and that's fine.  But it's my call.  Especially in the case of "We recommend CNS prophylaxis."  How the hell can you make that call?  Are you aware of the risks I'm willing or not willing to accept?

Honestly, I actively try to talk myself out of what Al-Katib and Anderson are saying.  I know I inherently want to believe what they're saying - that I'm done and this thing isn't going to come back.  But I know my inherent bias and I try to guard against it.  But the people who keep telling me to go shoot horribly toxic drugs into my spine and brain are not currently demonstrating the appropriate amount of care when they advise shooting horribly toxic drugs into my spine and brain.  Their arguments are addressed and sometimes countered by Al-Katib and Anderson, often with specific studies, statistics, and journal articles.  I haven't seen the same out of the people who tell me I should go lay in the hospital for a while and feel terrible. 

And I can't shake this thought:  These are "top ranked" cancer centers that are interested in and judged by their numbers.  Those numbers include the "cure rate" and the "relapse rate."  There is no doubt that my chance of relapse will be lower with more intense chemo, the same way it would be with 6 cycles instead of 4, or 8 instead of 6, or radiation as opposed to no radiation.  If I don't relapse, well, I'm "cured."  That's true whether or not I have a million other problems caused by more intense chemo.  So the incentive is to treat like a mofo with only the relapse rate in mind.  That's an easy recommendation to make if you don't have any contact with me, or don't have to deal with me on a daily basis. 

In short, I feel like Dr. Anderson and Dr. Al-Katib are treating me.  I feel like U-M and Sloan-Kettering are treating "a lymphoma patient."  A statistic.  Maybe I'm wrong, and there's certainly time for these hospitals to change my opinion.  But that's where I'm at right now.  Until I hear something like, "Nick, I know you're early stage with no bone marrow involvement.  And I know you are low risk and have had a good response to treatment.  But we still think more intense treatment is the best option, and here's why," I'm not putting myself through that shit.  And if the case is that strong, it shouldn't be hard for a doctor to say that.  But I haven't gotten that so far.

So I'm calling the good people at Sloan-Kettering back today, and I'm going to explain that I need more.  As a patient who has been dealing with this hell for a month now, I need more than a one-sentence recommendation based on a partial review of my medical records.  I need more than a "just to be safe" recommendation.  I can look at a pathology report, type the disease into Google, and figure out how to treat whatever that disease may be.  I don't need to consult the "best" doctors in the country for that.  I need context, information, and an explanation.  If I can't get it from them, then I'll find somebody else.  I can handle the fact that there's no "right" answer here so long as I know why your answer is what it is.  But I have to know why.  And that's what I'll try to figure out.

Not to be outdone, New York Board of Law Examiners attempts the internet

Remember this fellow?  He's the Phillies fan who intentionally puked on a little girl's head at a baseball game. 

I'm also convinced he's the National Director in Charge of Distributing Bar Exam Results to Bar Applicants. 

Previously, it was Illinois.  Then Michigan dumped on its bar applicants.  You're all familiar with Maryland (who, to their credit, successfully and efficiently posted their results).  Now:  New York. 

A buddy recounts the joy that was last Friday:

At 2:30, I got a text from [a friend], with "I think you passed ny bar!!!!!!!"  I demanded to know how she dared make such a statement, and she directed me to Above The Law which, of course, was totally overloaded.  She backs this off a minute: "is your middle name [___]?"  Now I know some shit is up.

Apparently, there was that whole "some jackass put the actual list online for an hour" thing.  I'm sitting at my computer tearing my fingernails out and shaking uncontrollably.  I'm online and I finally see my name in one of the lists posted in the comments section.  Of course, now, we're all beginning to question whether the information is legit.

Here's all you need to know about how these people handle distributing the most important exam results of many people's lives:  "some jackass [putting] the actual list online for an hour" is considered a "thing." 

By way of background:  The New York bar exam results were not supposed to be released until next week.  For some reason - nobody, not even the people with the New York Board of Law Examiners can explain why - another "incomplete," "unofficial" list was posted on Friday afternoon.

Adding to the awfulness, New York - kind as the people there are - lists full names of the people who passed the exam.  So everyone knows - and can check - if you passed the exam, which leads to texts like, "Is your middle name [___]?"  The extra-awful problem with incomplete, unofficial results:  The people who aren't on the list freak out because they think they failed, while the people who are on the list freak out because the results are "unofficial."  This is, as usual, the worst possible way anything could possibly happen.

According to Above the Law - a legal blog (who gave me a shout out last month) - here's how this played out Friday afternoon:

One person I know who I believe sat for the bar this July was on the list. My friend passed. Yay. But as I was fashioning the congratulatory email, the list disappeared. As far as anyone can tell, the results are now gone. The links for the individual names sends you to a “page not found” screen.

I called BOLE, but I’m getting a busy signal. I didn’t even know those things existed anymore. So either they are being inundated with calls right now or we are enduring a solar storm which will destroy all communications and send us back into the dark ages.

So the people at ATL called the New York Board of Law Examiners for an explanation.  Here's what they got:

Okay, I just got off the phone with a spokesperson for the New York Board of Law Examiners. They told me:
* “We didn’t post any results.”
* “We have not distributed any results.”
* “The results must have come from somewhere else.”

When I asked if she had any theories the results were in fact up, on the NY BOLE official website for over a half an hour, she said “no.”

So, that’s their story. I guess we’re supposed to blame it on a malicious, anonymous internet hacker of questionable motives? Your guess is as good as mine. Or BOLE’s, at this point.

I have over 100 posts on this blog since August.  And not once has a malicious, anonymous internet hacker of questionable motives screwed up one of my posts.  Not once have I posted something prematurely.  I think I spell a few words wrong in every post, and that's the extent of the screw-uppery on this site.  This stuff is not hard.  

The third worst thing in the world about all this:  The "accidental leak" was taken down at some point, but the list itself was copied and posted on the Above the Law website.  Which mean that NY Bar Applicants were trying to figure out if they passed the bar by looking at an incomplete, unofficial list of names that the NY BOLE claimed did not exist and was posted into the comments section of a legal blog.  Which led to this, from above friend:

Lists are promised on ATL, but they only go to the middle of M.  W is conspicuously absent, but it's in the comments.  I'm actually also trying to find people I know who took NY to find that they're not on the list (maybe the posted lists are just everybody who took the exam?).  In addition to being a wuss, I'm also a dick.

I continue to field questions and "congratulations" for having "passed."  And I'm getting more and more paranoid about who to trust.  Some folks are trusting ATL, others are blatantly suspicious.  I can't even decide whether or not to be suspicious.

I've been dealing with some uncertainty regarding my diagnosis and treatment for about three weeks now.  But that's understandable.  I know the reasons for that, I know what all the reports say, I know why there is room for clinical disagreement.

But these people have one job:  Figure out if Person X has passed or failed the bar exam, and get that information to person X.  They do this every year, twice a year.  They have complete control over the entire process until the time they choose to release whatever information it is they choose to release. 

And multiple times, in multiple states, they have screwed things up magnificently.  Either by design or by error, human beings have put other human beings through a similar form of mental anguish to the one I've gone through these past couple weeks.  Sure, the consequences are probably less significant, and the anguish doesn't last that long.  But still, why do that to people? 

To tell you the truth, this shit should terrify everybody.  Do you really think these people haven't screwed up the grading?  Think these people have never mixed up bar exam numbers?  Think they've never made a paperwork error (in the hundreds upon hundreds of pages that go into our bar admissions)?

Case in point:  When I was studying for the bar exam, BarBri (bar prep company, and as (if not more) incompetent than the Bar Examiners themselves) had us write practice essays and send them in for grading.  In one essay, I repeated the elements of "constructive eviction" verbatim from my lecture notes.  The grader's handwritten response on my essay?  "Incorrect elements of constructive eviction.  Review the law."  Well.  Thanks guy.

Anyway, what guarantee do any of us have that this doesn't happen on the actual bar exam?  Test takers never see their exams.  We never know our score, never know how things are graded, never even know if the exam that the Bar Examiners think is "ours" is actually ours. 

So after this many screw ups in this many states by several ostensibly unrelated bodies, how can anybody - bar applicants or the general public - trust any of this stuff?  Maybe this stuff is unique to this year or these particular states, but there's no question that the entire process is equally horrible and tedious in every jurisdiction.  And criticisms of the process and the exam hold up no matter what jurisdiction you're looking at.

One thing is clear:  I trust my doctors to figure out an insanely complicated diagnosis and an uncertain course of treatment far more than I trust anybody affiliated with any Board of Law Examiners to correctly post something on the internet.

If Mitch Albom wrote a column opposing non-Hodgkin's lymphoma, I would probably hate it and disagree with it

[Ed:  I keep thinking I'll make it a week without a Mitch rant.  But when Mitch Albom goes after Four Loko, the posts write themselves.]
 
I'm convinced that there is literally nothing Mitch Albom could conceivably write that I could even remotely agree with.  I just don't think it's possible.  I even hated the fake tribute column that the fake Mitch Albom wrote for me back in September (before I read the e-mail address and thought it was real).

Also:  I think he's probably ripping stuff off my website now.  Is it beyond Mitch Albom to plagiarize a cancer patient?  Of course not.  I'm pretty sure he steals most of his great ideas from people with serious diseases.

This week from Albom:  A boozy up-and-down makes this Loko loco

I know most newspapers have editors write headlines and stuff, but what the hell, let's just blame this journalistic abortion on Albom.

In short, the entire column is a literary incarnation of this clip from The Simpsons (sent to me by a reader on Friday):

 

Here's a general rule:  you can usually tell how bad an argument is by how quickly the proponent mentions "kids" or "the children."  

For Albom, it takes five words:

Can we agree that young people need no help in getting drunk?

And it doesn't stop:

Let the fisking begin.  Onwards, Mitch!

And can we agree that young people are attracted to the following:
• Large cans.
• Sweet flavors like lemonade or fruit punch.
• A cheap price.
• Staying awake.
Put those all together, and you can understand why Four Loko is one of the fastest-growing alcoholic beverages in the country.

I'm not even sure what to do with that.  I'm not necessarily attracted to large cans - I would not, for example, prefer a large can of urine over a small can over Coke.  Which is why I don't drink Four Loko.  And "sweet flavors like lemonade or fruit punch?"  I guess Mitch has a point, but then I went to middle school and my affinity for "fruit punch" seemed to wane.  "A cheap price?"  So you mean people like things that don't cost a lot of money?  And "staying awake?"  I...don't even know what to do with that.  I like getting a good night's sleep or something?

My biggest problem is with his last sentence:  "Put all those together, and you can understand why Four Loko is one of the fastest-growing alcoholic beverages in the country."

Like most of what Mitch Albom writes, this is unequivocally false.  This stuff has been around since 2005.  It didn't really start to see sales growth until recently.  Why?  As one of my friends writes:

[S]ince this drumbeat started, sales of Four Loko are up like three-fold. Also, I tasted the shit and it's godawful.

So you know who created this crisis?  The media.  YOU, Mitch Albom.  You killed your college professor, you killed Sparky Anderson with that dream you had last week, and now you're going to kill children.  You are the most dangerous man in the world, and your columns are slowly killing me.

Albom actually succeeds in listing some arguments against his position, even if he does manage to work in a jab at the Tea Party as well:

Now, in our current mood of "too much government," this will bring out protesters who cry 1. What's it your business if I want to get drunk? 2. Where are the parents in all this? 3.Why are stores selling to minors? and 4.What's it your business if I want to get drunk?

That's actually a pretty good job of characterizing some arguments against banning the stuff.  And Albom does a good job of addressing them.  If by "addressing them" you mean he concedes argument #4 and never mentions the other three ever again.

Instead, he fires out WON'T SOMEBODY PLEASE THINK OF THE CHILDREN!!!!

I am more worried about kids -- high schoolers, college freshmen -- stuck in that adolescent wrestle of wanting to be cool versus not wanting to damage themselves. A yellow or purple can with kiwi or grape flavoring that also promises to -- and this is critical -- keep you awake is a dangerously tempting product.

So ban Four Loko.  Fine.  And then...what?  Have you really done anything at all?  Or just made yourself feel better.  Albom addresses this point:

Teens can mix rum and Coke. They can make Irish coffee. You can never fully stop underage drinking. But you don't have to dress it in fruity colors and sell it cheap.

I mean...that's the standard for banning things now?  Being "fruity" and "cheap?"  Leaving aside Mitch's disdain for frugal gays, didn't he just acknowledge that banning this stuff won't have any real effect on anything, but we should ban it anyways because...I don't know, he doesn't like it?

There's one thing in this column that made me pretty happy, though:  A nice window into Mitch Albom's worldview.  I've read enough of his drivel to see this theme weaved throughout his pieces.  And I think it's actually a pretty good window into a certain form of the "progressive" worldview - and a major reason I'm not on board with modern liberalism:

True, stores should never sell this stuff to minors. And parents should teach their kids to be responsible. And we should all love our neighbor, give to charity and maintain the proper body weight.

But since that world is fantasy, this world requires some help.

Summary:  People should do the right thing.  But since they don't, we should mandate it by law.  And throw people in jail for disobeying.

I'm drawing a fine line here between crimes with victims - murder, rape, robbery - and things that Mitch mentions - loving our neighbors, giving to charity, maintaining the proper body weight, and underage drinking.  Everyone can agree that the former offenses should be addressed by our laws.  But there's a certain subset of people that believe that the latter things should be addressed by the law as well.  And I think there's a real problem with that mindset.  Not the least of which is the fact that Mitch Albom subscribes to it. 

One other thing that bothers me about Albom, besides everything:  This guy has one major "GET OFF MY LAWN" problem, and I don't get it.  The dude is 52.  He was born in 1958.  He reached adulthood in the mid 1970s.  So what the hell is this stuff:

In case you don't remember measurements from high school (which is the age of many kids drinking this stuff), old-fashioned Coke bottles used to be 8 ounces...

Remember, while many of us went through the sneak-a-beer phase, these energy drinks are a whole new game...

I am more worried about kids -- high schoolers, college freshmen -- stuck in that adolescent wrestle of wanting to be cool versus not wanting to damage themselves...

Today, kids guzzle energy drinks as if popping chewing gum.

Blah blah blah, "Back in my day we had some shenanigans but the kids these days are so much different because of Facebook and Red Bull and therefore we need to..." SHUT THE HELL UP MITCH YOU GREW UP IN THE MIDDLE OF THE COKE-CRAZED 80s YOU STUPID, PATRONIZING, CONDESCENDING, BORING, UNORIGINAL TWIT.

I'm not done with Mitch.  I'll never be done with Mitch.  The floggings will continue until he stops.

The good, the bad, the funny, and the Order Nisi

The Good News

Like a white cop who shoots an unarmed black kid while he's laying face down on the floor, I got off with a slap on the wrist yesterday.  At least on the radiation front.  Dr. Kim recommended - based on my case and my response to treatment - 15 days of radiation.  That's...not a lot.  I don't know how much radiation is a lot, since I haven't done too much radiation in my time.  But the durations previously thrown around were in the 4-6 week range, which, factoring in off-days and whatnot, could have run through the end of the year.  As it is, there's a shot I could be done with this thing well before Christmas. 

Also good news: the location of my tumors.  There are about a billion side effects associated with radiation (and chemo, and the entire cancer-treatment process).  But I'm dodging most all of them.  The tumor presented in a decent spot, so we'll only be clipping "about a centimeter of lung."  Which is cool cuz I have many centimeters of lung that won't be clipped.  My heart should be ok.  And the only real issue to watch is lymphedema, which (don't look at the pictures!) essentially means obstructions in the lymph nodes that could jack up my arm a bit.  But the risk is relatively small, especially at my low-dose levels. 

The thing that sucks about being a young guy with cancer, aside from being a young guy with cancer, is that the long term malignancy risks are more of an issue.  If you're 70, you can treat away without worrying about causing more cancer in 30 years.  But that's not the case with me.  In any event, those cancer commercials tell me that my chances of the average person getting cancer is like 106% or something like that.  So I'm not sure radiation will raise my chances much above that.  And it sure beats the alternative.

The Bad News

This was the worst news I received in a while actually:  Comcast is the only available cable provider for my building in DC.  That news hit me like a ton of bricks.  I'll be able to handle the whole cancer thing - they have treatment for that.  But there is no known cure for Comcast.  And that is depressing.

What's more, I'm two blocks from the damn Verizon Center.  You can't run some Fios a quarter mile from a building you spend millions to sponsor, Verizon?  Poor form. 

The Funny

I got a whole packet of junk from the Maryland Board of Law Examiners yesterday.  Sometimes, I think these people read my blog, and then intentionally create documents to seem like things I would create if I were making parodies of "Things Law Examiners Send Applicants."  If any Board of Law Examiners in the country had demonstrated a rudimentary ability to utilize the internet, I would be sure this is what happened.  I mean, look at this stuff:

I actually found another small piece of paper stuck in the envelope after I snapped this photo.

We have multiple documents in which half the words are bolded, a quarter of the words are in all caps, and a quarter of the words are underlined.  The pink thing is the AFFIRMATION FORM that I have to fill out and return under penalty of death.  It makes me promise things that I promised back in May.  They've also apparently included some leaflets like the ones US Air Force planes drop over foreign countries before we bomb them into oblivion.

Oh and hold on I want to transcribe this sentence for you:

The Court (the admitting authority) issues an Order Nisi which contains the names and addresses of all successful candidates.  The Order Nisi expires thirty days after its issuance.  No candidate can be admitted until after the expiration of the Order Nisi. 

I can't stop laughing at this stuff.  It sounds like the title for JK Rowling's next book:  Harry Potter and the Order Nisi.  Or maybe I'll turn it into my own short story, in which Nick goes to Annapolis in search of the Order Nisi because it will cure his lymphoma.  Maybe it's Matthew Stafford's latest injury:  "Stafford is out for the season with an Order Nisi."  Every letter I get from Maryland brightens my day.  Moar please. 

I also have a fun little special pink leaflet in my envelope that announces "EXCEPTION TO YOUR BAR ADMISSION HAS BEEN NOTED WITH THE COURT OF APPEALS OF MARYLAND."  What does this mean?  It means I haven't yet passed the character and fitness portion of the bar admission process.  For those of you not in the know, the "character and fitness" review is designed to ensure that lawyers admitted to the bar are decent people.  Obviously, the system is foolproof.

The entire ensemble is honestly one of the most confusing things I've dealt with in months, and that includes all the pathology reports I have consumed since August.  I know the Maryland Character Committee wants to interview me, but I want to interview the people who produce this stuff.  I want to know how they work.

Seriously.  I want to know who writes these things and where they learned to write like this.  And does one person write and format the whole document?  Or do is it done like an assembly line:  One person writes a paragraph, anther person inserts the bolding, another person underlines some words, and another person engages the all caps?   And is this stuff supposed to be serious?  Or are the people behind these documents just screwing around and having a good time?  Do they have a couple beers and decide that instead of sending one normal piece of paper, they should send out a series of leaflet-type things that contain the following words:  "Cross reference:  See Code, Business and Professions Article, 10-212, for form of oath.  See also Maryland Rule 16-811f (Client Protection Fund--Payments to fund) and Maryland Rule 16-714 (Disciplinary Fund)."  (That's honestly an excerpt from this one document I was sent.  It's like they put random pieces of paper in an envelope). 

Tell you the truth, I think I'm coming around on Maryland.  It was Dr. Jaffe in Bethesda, Maryland who seems to have put an end to the uncertainty regarding my diagnosis.  And everything the Maryland Board of Law Examiners sends me is so awesome.  These things bring me so much joy and blogging material.  I'm really going to be sad when I'm all admitted to the bar and they can't send me vaguely threatening letters anymore.

Mental Maintenance

  

This...was how I felt on Sunday.  

For the third straight Friday, my diagnosis - which I thought was settled after two doctors concurred with it in August - was kinda-sorta changed again.  For the third straight weekend, I had to sit around wondering what the hell everything meant.  And now I'm looking at a third straight week of sitting around waiting for answers that never seem to show up.  For everything to remain unresolved.  Another week in cancer purgatory, which is precisely the same as cancer hell. 

For the first time since my diagnosis 15 weeks ago, I've been having trouble sleeping.  I just couldn't sleep this weekend.  I'm frustrated more than anything else, but I can't even figure out what I'm frustrated with.  I think every single doctor I've dealt with has been amazing.  People at every single hospital and the NIH have bent over backwards to help me out.  People have given me their e-mail addresses and their direct phone numbers.  Even though things have seemingly come unraveled at the very end of my treatment, I can't come up with a single complaint about anything in this process.  Everybody is working hard and has been extremely invested in my case.  I can't say enough good things about everyone.  

But still, this is frustrating as hell.  And at times I think it's starting to get to me.  I completely forgot about the bar exam thing by Sunday; it was no longer important to me.  Nice to get it out of the way.  But in my mind, completely irrelevant.  

Every week I've had a plan; every week I've tried to move things along and every week for almost a month now, I've hoped for answers.  None of those have come.  There has been a ton of discussion, theories thrown around, diagnoses discussed and discarded, treatment plans debated.  But no answers.  

In part I recognize that there probably won't be any "answers," and that's fine.  I'd settle for a decision.  But to get to that point, I need to figure out a hell of a lot more than I have figured out right now.  And 15 weeks into this thing, that sucks.  To be going over the same things that we discussed and debated and analyzed back in August.  

The worst part is that all of this has put my life on hold.  I get that, and I can deal with it.  And that's why I was so conservative with my approach early on - always thinking of the worst case scenario, assuming I would be dealing with this through the end of the year, not even thinking of moving to DC until I had confirmation that the treatment was working and had the end of my treatment in sight.  

But I screwed up.  I did not account for the apparently real possibility that I had a one-in-a-million hybrid form of lymphoma that might mean that my diagnosis was off and my treatment was off and that I would sorta need to do things over again.  Or that everything I thought we had figured out might not actually be the case, and I'd be left in a situation where multiple doctors declare that they have no real idea as to what the best form of treatment will be.  Really did not see that coming.  And it blindsided me.  I got t-boned like Gerry Bertier the moment he hit the accelerator and thought that maybe things were going to be ok.

So I'm not exactly sure where I was at Sunday.  Frustrated, definitely.  Not really upset, but more than a little disappointed that just as I thought things were winding down, I found myself in quicksand for three weeks.  Unsure about going forward with radiation, my move, starting a new job...basically piecing my life back together.  I thought I knew when I was going to be able to do that.  Now I'm not so sure.

***

This blog has really helped me keep my mind straight. I always have thoughts about what's going on, and writing them down helps me organize things and keep things in perspective.  But I'm not sure what else I could write about the current situation:  "No answer."  "Still no answer."  "We have half of an answer which is different than last week's answer, which doesn't really help us find the ultimate answer."  And so on.  Things move, but they just move so damn slowly.  I don't know what I can keep saying about this stuff.

So I just started talking.  I talked to my parents a lot at dinner.  I don't particularly like venting directly to my parents, since I don't think they need to worry about this any more than they already do.  It's not just that I care about other people, it's that my own mental state is upset if other people start getting upset about things.  So most of the time, the things I write and talk about around here are not things that I verbally discuss with members of my family. 

And I talked to Emily for a while after dinner.  I try not to vent to her too much either for the same reasons.  She's alone out in Virginia, away from her own family and dealing with a new job.  I don't need to pile on to the list of things she has to worry about on a daily basis.  But I don't want to shut anybody out, either.  So I try to walk a fine line between subjecting people to a stream-of-consciousness level of information, and keeping everything to myself.  It's been working pretty well. 

Those conversations helped a bit.  I'm repeatedly amazed at the sheer volume of questions my mother can pose.  Sometimes I think she would make the best lawyer in the family.  She would just brow-beat witnesses into submission with a steady stream of questions until they admit to whatever she wants out of sheer exhaustion.  And my dad is complimentary quiet.  I mean, I'm pretty sure he's concerned about my situation and the whole cancer thing.  But there was a football game on behind me and I'm not sure if the glances over my right shoulder are due to deep thought or an attempt to figure out if the receiver got both feet down in bounds.

And Emily is fun too.  She's a "tough love" type, although I think she overplays it at some points.  For example, her take on my situation:

Emily:  and theres no use worrying about what might have to happen in march. you might get hit by a bus tomorrow. theres nothing you can do about it. so keep looking at the positives because thats the best you can plan for

I was all better after she wrote that because I couldn't stop laughing.  I gotta stop focusing on the bad things and start focusing on the positives in life...LIKE GETTING RUN OVER BY A BUS!!  This is the same girl who asked me back in August, "What time is your autopsy?" (instead of "What time is your biopsy?").  She's great.

But she's also right.  And talking about things did help.  As much as I don't care for the psycho-analytical/therapy stuff, there's a ton of value in taking the stuff in you mind, throwing it out there, and seeing what comes back.  It's usually more useful than what you had going on upstairs previously.  Especially in mentally stressful situations.  I can't overstate how important that has been throughout this process, and that is why this blog and my supporters/readers/friends/family have been so valuable in the past few months.  

***

I think, much to my own dismay, I got away from the mindset that had helped me through all this in the first place.  I satarted thinking, "This is terrible.  I can't believe this is happening.  I'm not sure if I can handle this. Why? And why me?!"  And I got away from thinking, "This is cancer.  WHAT THE HELL DID YOU EXPECT YOU WEAK PIECE OF *$@! NOW MAN THE HELL UP AND GET BACK OUT THERE!"

I mean, did I really mean all that stuff I've written about being tough and fighting harder than others and keeping my head above water?  Of course I did.  Did that stuff just apply when things were going well and there were no bumps in the road?  Of course not.  It's cancer.  It sucks.  Every step of the way.  The way I see it, you man the hell up and take every twist and turn with dignity and poise.  It makes it a hell of a lot easier on you, a hell of a lot easier on your friends and family, and a hell of a lot easier to beat this thing.

You don't get to pick and choose like that.  You can't hold yourself up as somebody who is mentally tough if your mental toughness cracks when things don't go as you planned.  Your principles aren't really principles if they head for the hills at the first side of trouble.  Character is not defined by how you act when things are going well.  It is defined by how you react when the shit hits the fan.  Rudyard Kipling understood this:

If you can meet with triumph and disaster
And treat those two imposters just the same; 

If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

The way I see it, I'm either Rudyard Kipling, or I'm Mitch Albom.  You know my choice.

***

I think I'm probably justified in feeling whatever way I damn well please right now.  But that's bullshit.  That's not the way I've handled this so far, and it's not the way I want to handle it going forward.

I lost track of a lot of things that I've kept in my mind since day one.  For starters, this is cancer.  It's going to suck.  I'm not calling all the shots here.  There are a hell of a lot of people who deal with this disease who never get to look forward to the day when they will put this behind them.  I'll get that chance.  So I don't get to complain if it doesn't happen on my schedule.

Second, what exactly am I upset about?  The uncertainty, yes, fine.  But am I struggling through treatment?  I feel good about 95% of the time.  Is it upsetting to see "good prognosis" in every pathology report and journal article?  I don't think so.  Is it bad that doctors only discuss the best way to cure me and vanquish this thing forever, as opposed to buying me a couple more years or improving my "quality of life?"  Of course not.  Six months from now, every reasonable interpretation still points to "cured of cancer."  So I should direct my bitching at what particular fact, exactly?  The fact that I had to lose some hair to get there?  Doesn't seem worth it. 

Sometimes, as difficult as a lot of this is, keeping your head straight is as simple as taking everything in your mind, throwing it out there, and arranging the puzzle pieces into something stronger and more useful.  Sometimes, the people around you can really help with that.  And often, writing helps me do that.  I think these types of posts are the most useful to me because they mirror my mental progression, and you can almost see me organize my thoughts in quasi-real time.  If I had no audience whatsoever - if this was a completely private journal - I'd probably write something quite similar.  But as it is, some people like to read this stuff, and I like writing it, and so here we are. 

The bottom line is this:  I am fine.  I am going to be fine.  I am going to get through this.  Things will be sorted out soon enough, we'll make some decisions, and that will be that.  There won't be any looking back or second-guessing.  And I'll be confident that I will have done everything in my power to get things right.  When something like this happens, that's about all you can ask for.  So what is there to complain about?  We're long past the time for complaining.  I'm not really sure there ever was a time for complaining. 

So I'm done with that.  All of that stuff.  Complaining or feeling sorry for myself was never useful.  Not only was it not useful, it's actively detrimental to my treatment and my mood.  What's the point of that?  It just drags me down, makes me sulk, makes the people around me miserable, and so on.  I'll never be "positive" about this - you know my thoughts on that - but I can be a lot of other things that don't include sadness and misery.

So I'll do that.  I have another big week coming up.  I have a lot of things to do - both to finish off this cancer bug and in preparation for the move to DC.  I always said that whatever I have to do to beat this thing, I'm going to do it.  That fact shouldn't change because things got more complicated.  So it won't.  End of story.

The Campbell Trophy

Eleven minutes.  I made it eleven minutes after the release of the Maryland Bar Exam results before I found out that I had passed.

It wasn't my fault though - I really didn't look.  I was prepared to wait until I got whatever I was going to get in the mail at some point in the next week IN ACCORDANCE WITH RULE 8(A) OF THE MARYLAND RULES OF BLAH BLAH SHUT UP.  But the sister ruined everything.

Somehow, the little girl who didn't speak a lick of English when she came over from Bangladesh in 1993 acquired my bar exam number, found the bar exam result website, e-mailed the link to herself, figured out the release time, set her phone alarm, and managed to check the results of my bar exam all whilst tailgating before the Central Michigan-Western Michigan football game.  Then she called me at 4:41pm and screamed "Congratulations Brother!" into the phone a couple times.  That was how Nick found out he passed the bar.  

I'm only putting this here because there's like a 76% chance Maryland attempts to claim that I failed the bar at some point down the road.  Also, #1448-1451...you guys probably shouldn't have cheated off of each other.

I'll admit, that was clever.  Almost clever enough to make me think she might be a blood relative.  Not that she'd really want that at this point, given my genetic deficiencies. 

***

There's a neat little tradition in the NHL.  In short, the winner of the Eastern Conference meets the winner of the Western Conference in the Stanley Cup Finals.  After the conference finals, the Eastern Conference champion is presented with the Prince of Whales Trophy, and the Western Conference champion receives the Clarence Campbell Bowl.

The tradition is - as Nicklas Lidstrom demonstrates above - you don't touch the trophy.  You can pose with it, but you don't touch it. 

Why?

Because that's not what you want.  That's not what you work for. 

This is what you work for:

***

The Bar Exam is my Campbell Trophy.  I know I've been downplaying the the whole thing, and I really didn't know how I was going to feel when I found out.  It was definitely a relief - I don't mean to understate that.  And it's certainly wonderful to have one less thing to worry about.

But after the initial sense of relief, it was back to business.  It's not like I could go out to have a few drinks to celebrate.  I just finished six cycles of chemo, so I'm not exactly a bundle of energy at the moment.  And the first major report I received from the State of Maryland on Friday - the pathology report - is a little bit more important right now. 

***

 

So I guess the upshot is that there's one more thing crossed of my list.  But I'm not done.  I really wish I could celebrate this more, and I really look forward to the day when this is a bigger deal to me.  I wish it was a big deal now.

But alas, it is not.  I really do have bigger fish to fry at the moment.  And the upside:  It appears my chances of beating cancer are significantly higher than my chances of passing the bar.  So I got that goin for me.  Which is nice.  Plus chemotherapy was far more pleasant than the entire bar exam process.

So I'm not interested in your trophy right now, Clarence Campbell.  It's a nice gesture.  It's a fine accomplishment.  But it's not what I came here for.  I still have one thing left on my list.

Prologue: Week 16

 This is the calm...

Before the storm...

Aren't pictures fun?

It has been 16 weeks since my diagnosis.  And about four days since my new diagnosis.  I'm not sure what the deal is at the moment.  But I do know that we are going forward, not backward, upward not forward, and always twirling, twirling, twirling towards a cure.  Or something. 

I forgot to mention this last week:  Six cycles in, I finally solved nausea.  The trick:  I delayed my treatment as much as I could.  I didn't get blood work done the day before so I would have to wait for it to be done the morning of treatment.  I tried to drag things out in the treatment chair.  Went to the bathroom a lot.  Things like that.

In hindsight, it made treatment suck horribly.  Number six was the worst in the chair, in part because I was there for seven freaking hours.  But the upshot was that I received my anti-nausea drugs later, the harsh chemo drugs later, and I was able to make it until about 10pm before I felt even the slightest hint of nausea.  And then, because I had forced myself to stay awake and sitting up after treatment (instead of napping), I was able to fall asleep in about three minutes.  So I made it through treatment number #6 without taking a single anti-nausea pill.  Bam.  Nick 1, Chemo 0. 

But onto the real point of this post:  I had a sort of difficult weekend.  Physically, I felt just fine.  I can tell I'm through six cycles of chemo, but even I am surprised at how good I feel most of the time.  But mentally, things were getting a little tough.  I had yet another "mixed-news Friday," which always gets the weekend off on the wrong foot.  Then I thought about the prospect of another week with no answers.  Then I started to worry about the worst case scenarios.  Then I looked through some pictures - just normal pictures of me and friends at a bar or tailgating or whatever.  But I had hair.  And I had a beer in my hand.  And those are things that I never thought I'd have so much trouble looking at. 

And I had a lot of things on my mind.  A lot of things kept me up this weekend, which really hasn't been the case thus far.  Michigan won, which was awesome, except it was probably the most stressful win I have ever watched.  And the Lions crumbled in spectacular fashion because their defensive tackle missed an extra point.  What the hell am I supposed to do with things like that?  Can't I just have a normal weekend where Michigan wins by 20, the Lions lose by 30, and I have hair.

So I did what I do when things get all messed up in my mind:  I wrote.  And now I have a backlog of like 8 posts and I have no idea what I want to do with them or when I'm going to post them or in what order I should put them up.  So when I couldn't decide on a leadoff post for this week, I wrote this one and decided I would write a post about all the stuff I would talk about this week.  Instead of, you know, just actually talking about that stuff.

So here's what we got:  I'm going to tell you if I passed the bar, but the real story is in how I found about my bar results.  I have a pretty good post - real-time, almost - of my mental reconstruction over the last 48 hours.  The New York Board of Law Examiners decided they would not be outdone by Illinois, Michigan, and Maryland, and they made a strong play for the #1 spot in this week's Incompetence Power Poll.  And Mitch Albom ripped off a cancer patient's blog, killed Sparky Anderson, and is now trying to kill your children.  Also, I still have some mailbag stuff left that I've been sitting on for weeks because other stuff keeps coming up and I like to save those things for low-post days/weeks.

Oh, and I will also spend this week trying to figure out WHAT TYPE OF CANCER I HAVE AND HOW THE HELL I CAN MAKE IT DIE. 

Stay tuned.