This Saturday post is significantly better than last Saturday's post

Dr. George Papadopolous was the only one who approved of my "spray some Windex on the tumor" idea

So after meeting with Dr. Al-Katib on Thursday and Dr. Anderson on Friday, the situation is still to-be-determined.  But I have a much better idea of what is going on and where the docs are coming from.

For what it's worth, both Al-Katib and Anderson are inclined to think that my current treatment regimen is fine.  Dr. Al-Katib is probably more firm in that conclusion.  Dr. Anderson is open to changing things, but only if there's a good reason to do so.

We (my parents and I) met with the doctors for about an hour each.  That's a ton of time to spend with a doctor.  But it was excellent to have that much time to figure things out, especially when I endured about six days of hell following the call from Dr. Li last Friday.  Both doctors sat there and answered every question and discussed every issue.  That means a lot at this point.

As I said, Dr. Al-Katib was probably more firm in his recommendation.  He took issue with some specific language in the U-M pathology reports along with some of the terminology used by U-M doctors.  He had done some significant research on the issue - he came into our meeting with books and journal articles.  The gist of his argument was that there was no "right" way to treat my lymphoma - not even a "best" way - and that I didn't have Burkitt's or Burkitt's-like lymphoma according to anybody's pathology report.  And he's right about that - the pathology reports all conclude that I have aggressive high-grade B-cell lymphoma.  The things that spooked U-M were 1) the high proliferation index and 2) a type of genetic mutation called a c-MYC rearrangement.  The c-MYC makes a cell "crazy," as Dr. Al-Katib described it.  But there's no evidence that treating my type of lymphoma - which is literally deemed "unclassifiable" or B-cell lymphoma with features of Burkitt's - in any particular manner will produce better results.

Dr. Al-Katib's second main point was that the treatment is working.  He actually pointed out something that I hadn't noticed previously:  The PET Scan reports give a "SUV" number.  SUV means "Standardized Uptake Value."  This refers to the amount of radioactive glucose that is "taken up" by the active cancer cells, and, in essence, measures the activity level of the cancer.  Anything above a 2.5 worries oncologists.  My SUV in August: 33.5.  My SUV in late September: 2.1.  That's where the 95% reduction figure came from. 

So that's the gist of the meeting with Dr. Al-Katib.  He finished by saying that if his own son was in my position, he would treat him the way I am being treated right now.  That's a pretty significant endorsement.  At the very least, after the meeting, I was convinced that there is no "right" answer.  If you're looking at Burkitt's-like lymphoma and a 30-50% relapse rate without CNS treatment, then the answer is clear - you do the treatment.  But we're not looking at that situation.  We're looking at an odd lymphoma with no clear treatment path, but the one we've chosen has worked extremely well.

Dr. Anderson made a lot of the same points, although he seemed slightly more open to amending my treatment protocol.  Which I actually respected, because it means he's taking U-M's recommendation seriously.  But he added a few points that are worth noting.

First, Dr. Anderson reiterated that the Henry Ford tumor board was ready to pull the trigger with the more intense form of chemotherapy until my tests came back and showed that the cancer was localized.  He said he was actually encouraged by my original PET Scan, because aggressive, high-grade lymphomas like mine often aren't caught until later stages.  They're still treatable at that stage, but the case for a more aggressive form of treatment increases with the stage of the disease.

Dr. Anderson said that the more aggressive treatment probably would have been even more effective.  But, he said, it would have come at a cost.  As he put it, there's not much of a reason to bump your chance of success from 95% to 98% if you increase toxicity and the chance of complications from 5% to 20%.  Those are rough percentages, but the point is the same.  In short, the Henry Ford tumor board did not consider the relative benefit to be worth the additional risks of a more aggressive treatment. 

Dr. Anderson also made the point that the decision now is much different than the decision back in August.  In August, we had a PET Scan and a pathology report.  Now we have an entire clinical picture and a course of treatment to base the decision on.  And, as Dr. Al-Katib noted, the treatment is working.  Anderson had another analogy:  If the Lions are playing the Patriots, you put your money on the Patriots.  But if the Lions are up 24-0 in the fourth quarter, it's probably better to throw money on the Lions.  Bad team to use for the analogy, but again, point taken.  In short, it was a much closer call back in August.  Now, we have to account for the results of treatment thus far, and the results have been very good.

So where do we go from here?  First, I am going to continue to have all three doctors heavily involved in my treatment going forward - or at least until we make a decision - because I now understand completely the uncertain nature of my diagnosis and treatment.  (For what it's worth, there is more uncertainty in lymphoma diagnosis and treatment, and more room for disagreement, than with virtually any other cancer).

Second, I want Dr. Al-Katib and Dr. Li to speak.  I just want to make sure all the doctors understand what the issues are, why everybody is issuing a particular recommendation, and that everybody has considered all the relevant information.  Unlike law - where people can look at the exact same set of facts and come to completely different conclusions - medicine is science-based, and you are working with some degree of certainty about particular facts.  There is still room for frequent disagreement, of course.  But there is at least a greater chance that doctors can reach a consensus about particular facts. 

For my part, I'm going  to finish my treatment - the last cycle of R-CHOP and then a period of radiation therapy.  Radiation should begin about two weeks after my last cycle, but I'm not sure how long it will last at this point.  I'll know more in a week or two.

And then, I'll either be done or I won't.  I'll keep in contact with all my doctors, get Dr. Jaffe's take on the pathology, and possibly send my stuff out for another recommendation on treatment (Dr. Jaffe can provide advice on the diagnosis front, but not on treatment).  But now I have a bit of time to do that. 

This issue isn't resolved.  I'm not sure it ever will be, since this whole thing is an ongoing process.  But we're much further along than we were on Monday and I've effectively been talked off the ledge.  If more aggressive treatment is the best way to go, so be it.  But I want to fully understand the reasons for that before we go ahead with putting even more toxic stuff into my body.  At least now, we have a plan going forward.  That's good enough for me.

Friday alcohol (not induced) rant: Four Loko edition

[To keep you busy while I deal with doctors.  And because I have been a bad blogger and skimped on content this week.]

A friend asked me if I was going to blog on the Mark Dantonio/Chris L. Rucker (somebody explain to me why his middle initial is always in there) situation.  I said no.  I really wouldn't have anything interesting to add there.  Mark Dantonio reinstating football players to his team the day they get out of jail is no longer news.  I'm not sure anybody on either side - MSU or U-M - disputes this.  

So I was perusing the internet to catch up on the issue when this happened.  And I was crushed.  There was no way I could be on the same side of an issue as Mitch Albom.  Personal rule.  Screw the cancer thing.  This was serious.

Fortunately, Albom is so awful at everything that he managed to write a column that I had every incentive to agree with yet still hated more than nausea.

General rules:  Every time Mitch Albom writes a column, God kills a kitten.  Every time Mark Dantonio allows a player back on his football team immediately after said player gets out of jail,  God clubs a baby seal.   Every time Mitch Albom writes a column about Mark Dantonio allowing a player back on his football team immediately after said player gets out of jail, God clubs a baby seal to death with a kitten.

The background: Michigan State Football Coach Mark Dantonio allowed a player, Chris Rucker, back on the team the day he got out of prison for violating probation.  He violated probation by drinking and driving.  He was on probation for storming a dorm with a bunch of his teammates and beating up people (you can complain about the details all you want, Spartan fans, just know that you're complaining about the details of an incident where a good chunk of your football team ran into a dorm and beat up random people).  And this is not the first time Dantonio has reinstated a MSU football player the day he got out of prison. 

I don't know what interesting take I could add on this. I don't necessarily think the dude should be banned for life.  But reinstating him to the team the day he gets out of prison - and before a big game against Iowa - is probably not the best way to handle things.  And Michigan fans are extra incensed because a certain local paper, which may or may not employ MAlbom, has spent the past couple years launching a jihad against the Michigan football program for stretching too much during practice while this type of crap becomes routine at MSU.  All things considered, I don't really have strong feelings on the situation.

But surprise surpirse, Mitch Albom does.  Since everything is the Great Crusade to Protect All Humanity to him, this shouldn't come as a surprise.  Albom:

For those just joining this story, Rucker, 22, is a very talented senior who was one of 15 Spartans at the scene of that dorm altercation last November. He pleaded guilty to misdemeanor assault and battery and received 12 months' probation. That probation included no buying, owning or drinking alcohol.

Yet three Sundays ago, Rucker was arrested at 2:19 a.m. and charged with operating a vehicle while intoxicated. He had a blood-alcohol content of .10, which is over the legal limit of .08.

Drinking -- a probation buster -- would have been bad enough. Getting behind a wheel made it reprehensible.

Thoughts:  1) "Altercation" is the Free Press's accepted term for "15 football players storming a dorm and beating up random people."  2)  Very minor point, but "Buying, owning, or drinking alcohol"?  I think Mitch is OCD, and must do everything in threes.  Because I'm not sure how buying and owning are any different.  3)  The only reason for blood-alcohol content statutes is so people can say "so and so was over the legal limit" or "so and so had a blood-alcohol content X times the legal limit."  That's it.  That is the only reason.  If some people had their way, the limit would be .00 and we could make statements like "the perpetrator was arrested with a BAC infinity million times the legal limit."

As usual, Albom takes a reasonable position and makes it absurd with bombastic language and asinine statements.  Like this one:

Why stop there? The lives and health of innocent people are endangered every time someone drinks and drives.

Wrong.  Unequivocally false.  Absolutely not correct.  If you have one beer and drive home, you have not endangered anybody's life.  Perhaps that is true for Mitch Albom since he's like 5' 2".  But it is not true for the average person.  If you agree with this statement, you agree that roughly 150 million people in this country have endangered the lives and health of innocent people. 

It's a small distinction, but an important one.  Drunk drivers - particularly very drunk drivers - endanger lives.  But this shift away from "drunk driving" to "drinking and driving" is very real - take, for example, those "buzzed driving is drunk driving" ads.  Make the distinction.  Reality has nuance.  But Mitch Albom "journalism" has no room for that.  The very next paragraph:

If the coach needs reminders, look no further than the football world or his own state. How about Cleveland's Donte Stallworth, driving while intoxicated and killing a pedestrian with his Bentley? How about Reggie Rogers, the former Lion, killing three teenagers while driving drunk? How about those four Lake Shore teens killed last year by a drunken driver?

Ahh its the old "argument by piling bodies everywhere" tactic.  And for the record, Stallworth was high, Reggie Rogers had a BAC of .15, and the woman who killed the four Lake Shore teens had a BAC of .20 (the average BAC of drivers in fatal accidents is .17).

Albom has a predictable column pattern:  Establish message in the first section, restate message in section 2, make absurd, sweeping, bombastic statements in section 3.  Section three is where he really loses it:

This is not a "personnel" issue. This isn't some human resources department. It's a football team at a state university made up of kids who are mostly on scholarship. You don't get to keep this stuff secret. The citizens of the state have a right to know the standards at this school and on this team, especially when it comes to crimes.

THE AMERICAN PEOPLE ARE ASKING, COACH DANTONIO!!!

A little can lead to a lot, especially in bad habits, particularly in drinking. No surprise that a few years ago, Reggie Rogers, even after killing those teens, was arrested again for DUI (at least his instance), and actually fell asleep in the police car after calling an officer "Coach James."

"A little can lead to a lot" followed by this sequence:  Killing three people, then calling a cop "Coach James."  

Rogers was given extra chances, too.

There we go.  In one column, Albom has lumped in anybody who has had a drink and then driven, Chris Rucker, and alcoholic degenerates who kill kids.  There are shades of gray in this world.  Not in Mitch Albom's.

***

The colors just lure me right in

There's a quote from an episode of Family Guy that I thought of today:  "Nice effort Brad, but let's remember our performance hierarchy: legitimate theater, musical theater, stand-up, ventriloquism, magic, mime."

In the world of journalism, local television news hovers between "magic" and "mime."  So I assume that's why WDIV Detroit led their 6pm newscast yesterday with a Warning About "Four Loko" Drink.  I don't really blame them: thinking is hard and they have to condense complex stories into minute-long segments.  But you know you're big time when you hit the pages of the venerable New York Times.

The issue:  Four Loko is an energy-drink/alcohol mixture.  Actually...that's pretty much the entire issue.  Hold on, I have to figure out why this crap has blown up to the point where my dad asked me the other day, "Hey, have you ever heard of the drink 'Four Loko'?"

Oh, here it is:

Mixing alcohol and caffeine is hardly a new concept, but a rash of cases involving students and others who landed at hospitals after drinking beverages that combine the two in a single large can has alarmed college and health officials around the country. 

That sounds serious.  A "rash."  I don't like rashes at all.  Explain this "rash" to me, New York Times!

A brand called Four Loko — a fruit-flavored malt beverage that has an alcohol content of 12 percent and as much caffeine as a cup of coffee — has come under particular scrutiny after students who drank it this fall at Ramapo College in New Jersey and Central Washington University in Ellensburg, Wash., ended up in emergency rooms, some with high levels of alcohol poisoning.

DEAR LORD A COUPLE PEOPLE AT TWO SCHOOLS WENT TO THE HOSPITAL BECAUSE THEY DRANK TOO MUCH.  GET OUT THE BAN HAMMER.  You know what else has an alcohol content of 12%?  Wine.  And you know what else has as much caffeine as a cup of coffee?  A cup of coffee.  You know what else mixes alcohol and caffeine?  Red Bull & Vodkas.  Irish Coffees.  Rum & Coke.  Vodka & Sprite.  ANY ALCOHOLIC BEVERAGE MIXED WITH ANYTHING THAT HAS CAFFEINE.

Oh, and about that Central Washington University party, which started all this: From the Phusion Projects website:

In fact, while our product is mentioned only twice in the 44-page police report, hard liquor, vodka, rum or other alcohol is mentioned at least 19 times; beer is mentioned at least 3 times; and illegal drugs or roofies are mentioned at least 14 times

Hey people of the world:  If you drink a ton, smoke a lot of pot, and drop roofies, you're probably going to end up in the hospital.

Anyway, evil corporation is right.  Here is the entire extent of "Four Loko" involvement with the Central Washington party, at least via the police report:

And here's the New York Times synopsis of this fact, courtesy of Washington Attorney General Rob McKenna:

Rob McKenna, the attorney general in Washington, said that while many students at the party had mixed alcohols, some of those who were hospitalized had drunk only Four Loko.

A "not alert" girl with "sweaty hair" (what?) and "make-up" running down her face says she had "one drink tonight."  Let's try an exercise, law enforcement officer McKenna:  You pull over a "not alert" guy with "sweaty hair" and "make-up" running down his face and he says he had "one drink tonight."  Do you take him at his word?  Let him go, since one drink certainly won't get his BAC above any legal limit?  Didn't think so. 

Oh and maybe this explains that girl's condition:

But the result:

That's a Google News search for "four loko dangerous" over the past two days.  There are 214 articles. 

The Phusion Projects statements on this issue are actually rather coherent and reasonable.  It doesn't matter.  These things will be gone within a year.  This is how it begins:

At the urging of 18 attorneys general, the Food and Drug Administration, which has never approved adding caffeine to alcohol, is reviewing whether the drinks are safe. And in July, Senator Charles E. Schumer of New York asked the Federal Trade Commission to investigate whether the drinks, with colorful packaging and flavors like watermelon, blue raspberry and lemon-lime, are “explicitly designed to attract under-age drinkers.”

I'm not sure what the phrase "which has never approved adding caffeine to alcohol" is supposed to mean.  Is this some sort of problem?  If it is, then you pouring some Jack Daniels into a bit of ginger ale is now an issue for the federal government.  And anything that Chuck Schumer is involved with is inherently terrible.

It doesn't matter.  It doesn't matter if this is objectively stupid.  These people don't care.  They're too-dumb bureaucrats with too much power.  As I said a couple weeks ago, in summarizing the thought process of every politician ever:

1. Something bad happens.
2. WE GOTTA DOOOOO SOMETHING!!! WE GOTTA DOOOOOOO SOMETHING!!!!
3. Do "something."

Watch the news, read the news, listen to anybody in politics at any time, and this is all you get.  No matter which party is in power, no matter who we elect, you're going to get the same thing.  So have fun with that.  Until it's banned.

***

People ask me if I'm going to continue this blog after I'm done with cancer.  I don't know.  Right now, I'm focusing on getting rid of the seaward first.  Everything else can come after that.

But if I did, I think I have my purpose:  to convince people that most of what they read, hear, and see in this world is incredibly stupid.  American Beauty is one of my favorite movies.  There's a memorable quote from that movie:  "Sometimes there's so much beauty in the world, I feel like I can't take it.  Like my heart's going to cave in."  Well, sometime there's so much stupidity in this world, I feel like I can't take it.  Like my head is going to cave in.  I agree with Radley Balko that there is only one bumper sticker that I would ever consider putting on my car:

They are

But my diagnosis has certainly exacerbated my irritation complex.  It's not outright anger, since writing here forces me to articulate my thoughts beyond the point of outright anger.  But I find myself much more irritated with meaningless charades and objectively stupid statements made by people who wield way too much power.  Election commercials have never bothered me like they have this year.  I've always disliked Mitch Albom, but he's outright annoying at this stage.  And my current situation has given me a new perspective on political issues like medical marijuana, stem cell research, and health care reform. 
There were 214 articles printed over the course of two days that explained how "dangerous" this Four Loko crap is based on this Central Washington Party.  How many of those "journalists" do you think did anything close to what I did in about an hour using Google?

If I kept things going here, the content of the blog would change, but the mission would not: to inform people of things they didn't already know and get people to think about things in a different way.  I don't know if this would be terribly interesting to people.  I doubt it.  I just hope I can still write like this when I'm off all my performance-enhancing drugs.

***

Oh yes, I'm in the middle of figuring out what type of lymphoma I have and I just wrote a long post defending a drink I will never touch (because it's probably awful and it's made by Ohio State grads).  My bad.

I met with Dr. Al-Katib yesterday and I will be meeting with Dr. Anderson this morning.  The meeting lasted for about an hour, but it ended with his assertion:  "If you were my son, I would treat you the way you are being treated now."  Which is a pretty serious defense of my current regimen.  For a number of reasons, Dr. Al-Katib was not swayed by the U-M recommendation, and he went to great lengths to justify his reasoning.  There were books and journal articles involved.  I saw pictures of cells.  It was fun.

Anyway, I'll go through both meetings and then get something up (hopefully later today) on how they went and what Dr. Anderson and Dr. Al-Katib think about the whole issue.  I know Dr. Li and Dr. Anderson finally spoke.  I am nearly positive this will not change Dr. Anderson's position, but we'll see what he says.

I am in a terrible mood today so I am avoiding the internet

Except to say a few short things:

BRONCO RANT REDUX.  Hey Boise State:  If you want me to take you seriously as a national title contender, playing Louisiana Tech in front of a not-sold-out crowd on a Tuesday night on your blue field with a track around it and Pam Ward announcing is not the way to do it. 

THE DOCTORS.  I am meeting with Dr. Al-Katib tomorrow morning and Dr. Anderson on Friday morning.  Dr. Anderson and Dr. Li should be talking sometime today.  I have a lot of doctors.

THE SLIDES.  Will be sent out to Dr. Elaine Jaffe at the National Cancer Institute tomorrow.   Dr. Jaffe handles difficult lymphoma cases and is an expert in lymphoma classification and definition. 

Also, I thought of law school today.  Specifically, the week of 1L property where I took a single note and it was the word "SPLEEN" in giant capital letters because we spent an entire week discussing whether individuals have a property interest in a removed spleen.  Well I now have a removed tumor that is technically mine but pathologists are always very protective of it and wont give me pieces of my own tumor.  And this is frustrating me, to the point where I almost told a pathologist to give me the damn tumor because it's mine and this is what I learned in my 1L property class.  Fortunately, I didn't. 

I HATE WIND.  Seriously.  I hate it. 

The Issue

[Warning: Real medical-ish stuff ahead.  Quite detailed.  I think it's interesting, since it sorta impacts me significantly.  But you might not.  Maybe you will.  Anyway, here is your warning.]

I learn more and more about lymphoma every day - far more than I ever wanted to learn.  But the current U-M induced fiasco is somewhat interesting.  Plus I was either wrong or not clear on some issues earlier, so consider this my clarification.   

There are two major issues here:  Diagnosis and treatment.  These things are distinct.

My diagnosis hasn't changed, really:  Everybody has pretty much concluded that I have diffuse large B-cell lymphoma.  That was what Henry Ford concluded, Dr. Al-Katib agreed with that conclusion, and U-M eventually seemed to conclude the same.

But the conclusion doesn't really mean much.  First, in reaching that conclusion, everybody has noticed some odd features of my lymphoma.  And if you like reading pathology reports, today is your lucky day, because here are some excerpts from my U-M pathology report:

Words you don't want to read multiple times in your own pathology reports:  "But," and "however."  The top path report is actually from my original core needle biopsy, while the bottom report is from the excisional biopsy.

While the uncertain nature of the classification is apparent, both reports conclude that "this case is best classified as an aggressive B-Cell lymphoma with a c-MYC rearrangement and high proliferation fraction."

These two features - the c-MYC rearrangement and the high proliferation fraction - are the reason for concern.  These things are more indicative of Burkitt's lymphoma, but as Dr. Al-Katib noted, are found in about 10% of B-cell lymphomas. 

If you check out both reports, they both conclude that "clinical correlation to determine the appropriate therapeutic protocol for the patient is highly recommended."  I don't know exactly what this means - perhaps it is in every path report - but I believe it means, "We're leaving the treatment issues to you people."  In essence, the pathology is not definite enough to make this a clear case of Burkitt's or B-cell lymphoma, and therefore, the correct course of treatment is far from clear. 

Burkitt's generally requires a more intense treatment than B-cell.  B-cell can be treated as Burkitt's and vice-versa, and when I say that, I just mean that there are a range of therapies available for B-cell and a range of therapies available for Burkitt's, and doctors can use any treatment they deem necessary.  There might be reasons to treat a Burkitt's as B-cell or a B-cell as Burkitt's and so on.  While the pathologists can help categorize the lymphoma, I don't how much they can contribute to determining the proper course of treatment.

What pathologists can do, however - and what is critical here - is figure out how the tumor will behave.  The key concern, as I've mentioned, is that Burkitt's carries a greater potential for central nervous system (CNS) infiltration and relapse.  Apparently - and this is just my understanding - U-M pathologits placed a greater emphasis on some particular tests or characteristics that, to them, indicated that my lymphoma would behave more like Burkitt's than B-cell.  This has major implications for treatment - the more likely the tumor is to behave like Burkitt's and, therefore, enter the CNS, then you have a really good case for treating the thing as Burkitt's.  On the other hand, if the thing is going to behave more like B-cell, then treat it as such.

I think this is the major question:  Is this thing going to behave more like B-cell or Burkitt's  Everybody agrees that the thing is in a gray area, but that's not terribly important.  What matters is how it's going to behave, and this naturally entails a host of other questions:  What are the chances it behaves as X or Y, what are the risks of that, what are the risks of more intense treatment, what are the long-term concerns, and so on.  For example, Dr. Li mentioned that there is a 30-50% CNS relapse rate for Burkitt's or Burkitt's like lymphoma if you don't treat it with CNS prophylaxis (essentially, treat it as Burkitt's).  Now, this is overstated - I'm sure nobody at any hospital would have been accepting of a 50% relapse rate - but that number does matter.

So here's how this whole thing works in my mind (using speculative numbers):  Let's say the pathologists say there is a 50% chance this behaves like Burkitt's, and studies show a 50% CNS relapse rate without adequate treatment.  That is, to me, a 25% chance of CNS relapse, and going with a more intense treatment is a no-brainier.  But if other pathologists look at this and say they are confident it will behave like B-cell, or other doctors say, "Well, your particular features do not indicate a high risk of CNS relapse," then that final number changes, and I'm less likely to jump at the opportunity to have things jammed in my spine. 

In reality, of course, we're not dealing with round numbers and easy percentages.  We're dealing with varied opinions on every aspect of this thing, up to an including the risks of treatment and increased toxicity and so on.  So you can see how this can very quickly become an insanely complex decision.  And that is why I'm leaving no stone unturned this week. 

Cancer killing week on hold due to end of world

What the hell is going on outside today?  I'm feeling a little blah (off the Prednisone) today, so I slept til about noon.  But I wake up, and we have wind warnings, tornado warnings, news crews taping falling leaves, schools canceling classes, and it looks like the apocalypse outside.  So I'm putting the my cancer work on hold for a couple hours to determine if the world is going to end.  If it does, that will save me an awful lot of trouble and cell phone minutes.  So...moderate upside.

A quick update on where I am at the moment, with a more extensive update with interesting stuff coming later on:

I DID A LOT OF STUFF YESTERDAY.  I was not aware of the potential end of the world yesterday, however, so I proceeded as if I had plans after today.  Both U-M and the people over at Dr. Al-Katib's office really helped me out. U-M collected all my tissue and and reports, and I picked those up on Monday morning.  I then took all my stuff over to Dr. Al-Katib's office where one of the nurses sat down with me and went over what they would need to review my situation. 

I actually got to take a look at some of Dr. Al-Katib's patient notes on my original visit.  The thing that is becoming clear at this point is that everybody is seeing the exact same stuff.  They just happen to be interpreting it differently.  Which is a different situation than, "Your original doctors missed something."  Dr. Al-Katib was originally on the fence, but he also noted that 10% of B-Cell cases have the mutations that my lymphoma has.

I also got a call into the Stanford Cancer Center.  More on this issue in a bit.

RIGHT NOW.  Dr. Li and Dr. Anderson were supposed to chat early this week.  Dr. Li said she would call me after this happened, and she loves post 6pm phone calls, so I'll wait until then.  I'm waiting for a call back from Stanford, which is supposed to occur "within 24 hours" of when I called yesterday afternoon.  I want to speak to Dr. Anderson before our meeting on Friday, but I probably won't give him a call until tomorrow, just to make sure he has already spoken to Dr. Li.  I got all my stuff to Dr. Al-Katib yesterday, he will review it soon, and I will probably meet with him on Thursday. 

So at the moment, I'm waiting for multiple phone calls from multiple people.

Oh and you want to know what is extra fun?  Waiting for (literally) life-altering phone calls one week before an election.  I get a lot of calls on the house phone from random numbers.  Sometimes they are doctors with information on my cancer.  And sometimes they are volunteers asking me to drive my elderly neighbors to the polls next week.  The latter group:  I want them dead. 

SENDING THE SLIDES OUT YET AGAIN.  I'm leaning toward sending my slides out to another hospital to get an opinion. I don't want to be "that guy," (does the "that guy" thing even apply in this case?), but the more I understand about this issue, the more I realize that every opinion is critical.

On this point, I've received many, many suggestions.  I've been thinking about this issue since Friday, but my doctors will have more impact on this decision than anything else.

One point I wanted to make:  "Ranking" means next to nothing to me.  I mean, they do in a very general sense - there are certainly differences in quality of care, and if you are a highly ranked "cancer center," you probably provide a higher level of care than a completely unknown cancer center.  But I'm not making this decision by picking up a copy of US News. 

There are a number of reasons for this.  First, I've read quite a bit on the value of hospital rankings prior to my diagnosis (because I am nerd), and the reality is they are pretty crappy.  They either rank "health systems" or "hospitals" or "cancer centers," which are not very helpful if you have a specific condition.  Plus, they include random and stupid factors that have no impact on quality of care.  Second, I don't want a highly ranked hospital as much as I want people who deal with a significant number of lymphoma cases.  Third, I want a system that treats a lot of Burkitt's cases, since those cases are relatively rare in the US.  Fourth, I know first hand how law school rankings are complete and utter garbage.  It's an absolute shame that people (students and employers alike) place so much emphasis on them.  I'm not going to do the same with my own life and death decision. 

So based on my criteria, I'm looking into sending my stuff to the Stanford Cancer Center or the National Cancer Institute.  Stanford was mentioned by a couple doctors as the best place for lymphoma treatment and research, and Dr. Al-Katib has a connection with a prominent lymphoma researcher at the NIH. 

For what it's worth, I do not place any more weight on any recommendation that I currently have, because the details of a particular recommendation matter a million times more than anything else.  When it comes to essentially meaningless stuff like selecting a law school or selecting a potential employee from a massive pool of essentially similar candidates, I guess you can use numerical rankings as a metric because the stakes aren't that high.  But by and large with these law school rankings, selecting a Yale grad over a Penn grad because the Yale grad went to Yale really only serves to increase the chances that you selected a complete douchebag.  Within a particular range, rankings say very little about the quality of what you will be getting, and the same thing applies to hospitals.

That's all for now.  More to come. 

Things get realer than Real Deal Holyfield on the cancer blog

Well...that was fun.

Michigan didn't play, the Lions didn't play, and yet I still managed to get my marbles stomped this weekend.  I'm bald, bruised, battered, but not bulimic.  It's recovery week of cycle 5 and while I thought I'd be dragging along, looking forward to my last chemo cycle and then some nice radiation dessert, the shit has hit the fan:

 

But hey, I've had a few days to calm down.  So where am I at now, and where do we go from here?  Well it's a good thing you asked those questions, because those are the exact ones I chose to answer here on my cancer blog today!

I SHED A SINGLE TEAR ON FRIDAY.  Nah I'm just kidding.  I didn't cry.  Seriously.  The last time I cried was when Steve Yzerman retired and nothing that has happened in my life since then has made me want to cry more, so that remains the last time I cried.  

Anyway, I will admit that I was mildly disappointed, but I was surprised at how not-disappointed I was about the whole thing.  It's hard to adequately transcribe on this blog the precise nature of my conversations with my doctors, so something that comes out here as a real fist-to-the-face might not have seemed that way for me at the time. 

So I can safely say now, a couple days after hearing the news, that I'm not crushed by this.  I'm not even that bothered.  Dr. Li did a great job of explaining everything to me, from the reasoning behind their recommendation to the potential treatments to the pragmatic concerns and so on.  It really helps when doctors do this, because it is absolutely TERRIBLE to not know what's going on when it affects you so significantly.  This especially applies to me because I am insanely involved in my own treatment, and I will sit on the phone and ask doctors questions about cytogenetics for as long as it takes until I feel I have an adequate understanding of the issue.  (It's really weird what I want to know about my disease:  I do not want to know how any procedures (bone marrow biopsy, chemotherapy, surgery) are going to go beforehand; I want to know every little thing about every aspect of my treatment (diagnosis, pathology, the history of the drugs); and I want to hear virtually nothing from other cancer patients, the internet, etc.).  

The shock of my initial diagnosis was exponentially larger than the news I received on Friday.  I wouldn't even put the two in the same class.  So beyond the original diagnosis, the rest seems like "just details" in my opinion.  I know there is now a decent chance that I'm not going to be doing just one more cycle of R-CHOP, some radiation, and then be done with this thing.  That sucks, but that's also life, and cancer teaches you pretty quickly that you have to pick and choose the things you whine about.  And right now, I'm at the "if it's not actively killing me, whining will be kept at a minimum" point.  And whatever this lymphoma feels like calling itself, there's no question that it is dying and I am not.  

So if I have to give a final verdict on the disappointment, it will be this: mildly irritating. Irritating in the sense that what I thought was going to happen will not happen, and what will happen in the next couple months might take a little bit longer or be a little bit more intense.  In the newly-restructed "great scheme of things" center in my mind, this just isn't something I'm going to get that worked up about.  I am most definitely not freaking out, man:

WHAT?  WHY?  If I had to pick my primary negative emotion about all this, it would be confusion.  The treatment for many forms of cancer is very standardized - if you have a particular type of cancer in a particular stage, you'll be treated roughly the same way no matter where you are.  I get that my lymphoma is "borderline," but I'm not quite sure how Henry Ford and U-M ended up so far apart here.  For what it's worth, U-M would have done three cycles of R-CHOP and then radiated things.  They might have done six cycles of R-CHOP and then not microwaved me (that is, if I had straight B-Cell).  Dr. Al-Katib would have done four cycles and then radiated.  U-M is less hot on radiation because I am "under" their 10cm-tumor line for radiation, while Henry Ford says radiation is a "certainty" due to the size of my tumor. 

Also, U-M did not do any additional testing on my tissue.  They looked at my tissue and looked at the pathology work from Henry Ford.  But they didn't do their own staining or testing or anything like that.  So two groups of pathologists looked at exactly the same stuff, and one says "Do X" and the other says "Do Y."  And I have every reason to believe that everybody involved here is pretty damn smart and good at their job.  So...what the hell? 

What I sort of want to do at this point is lock all my doctors and pathologists in a room and tell them that nobody is allowed to leave until everybody figures out what the hell is going on.  But I'm afraid the only consensus they would reach is that Dr. Anderson is the only Caucasian in that room. 

I don't know if there is a correct answer here, and that's sorta scary.  But I do know that we're going to be moving in that direction very soon.  And at the very least, I have a good understanding of why the issue is so complicated and borderline.  It's not like I'm sitting here waiting to be told what I have and what I should do.  I'm very active in all this and will do everything in my power to make sure we figure out the right course of action. 

THE SHOE IS ON THE OTHER HAND.  As many of you know, I cringe at the whole notion that I have a "positive" attitude.  On Friday, I think the whole "positive attitude" meme was brutally murdered.  There's nothing positive about 90% of what goes on when cancer is involved.  Maintaining what I consider a "positive attitude" requires a level of outright delusion and compartmentalization that I do not possess. 

But you also know that I (apparently) have a distinct way of dealing with this (and other things), so I'm trying to figure out exactly what that is.  I think it's part realism, part level-headedness, part pragmatism, and part "that's just the way I am."  I get worked up about little things far more than I get worked up about bigger things.  No real idea why.   But it's certainly been helping these past few months.

Anyway, my point:  There is a lot of stuff that I shouldn't lose sight of in all this.  Just because Moderately Bad Thing A occurred does not negate Indisputably Good Things A, B, C, D, and so on.  So, the Indisputably Good Things that nobody should really lose sight of:

• Burkitt's is exceptionally curable, and my lymphoma's Burkitt's-like features, regardless of final classification, make it more susceptible to treatment.
• The response to treatment has been extremely positive.
• Dr. Li repeatedly characterized me as "low risk."  I'm not even sure what that was in reference to, but it sounded like a good thing.
• Every doctor has been and remains very confident in reaching the "cure" stage, and the main focus has been on "making sure this never comes back."  That has been the language used in multiple appointments with all of my doctors.  I'd like both of these goals to be satisfied, and I'm glad for the dual focus.
• I felt excellent for the third weekend in a row, my appetite has been great, nausea was mild and lasted for about two hours, and I have had no problems with fatigue whatsoever.  And that's five cycles into a pretty serious chemotherapy regimen.  
• My overall tolerance of treatment gives us greater flexibility to select a treatment, and allows us to start on a potential new treatment more quickly.  
• The worst case scenario - chemo ineffective, please restart - is not on the table.  Regardless of the treatment selected, it should not have a significant impact on me finishing this off by the end of the year.

So if you don't sweep those things under the rug - and you shouldn't - where are we at?  I hope and doctors think that, for all intents and purposes, I will be cured of cancer by 2011.  Now?  Well, I hope and doctors believe that I will be cured of cancer by 2011.  Whether I have to run 10 miles or 50 between now and then is less daunting when you focus on the finish line.  Doesn't mean that I'm not aware of what I have to do between now and then; it just means that I'm not going to make the situation out to be any worse than it actually is.

OTHER THAN THAT, MRS. LINCOLN, HOW WAS THE PLAY?  Other than the ongoing Burkittsgate, the weekend went very well.  I actually went out on Saturday night for the first time in a while (not that I'm averse to going out or anything, I've just been in Ann Arbor for a few weeks and I usually don't go out both nights.  Plus the whole crowd thing).  Saw a lot of people that I haven't seen since I had hair.  It was good to get out, good to see people, and so on.  I'm getting better with the whole "not drinking at the bar" thing, so that helps.  And the sister made a quick jaunt into town for 24 hours for whatever reason, so it was good to see her.

The main thing was that I felt very good the entire weekend, and when I feel good, everything else goes pretty well.  I eat, I'm upbeat, I can deal with little things like Lymphoma Mystery Theater.  The mind and body go hand in hand during all this, and if one fails, it can drag the other one down very quickly.  Sometimes keeping them both right is a pretty delicate game, but the people around me have really made it easier for me to do that these past couple months.  I know people aren't quite sure if they can have an impact when somebody they know is facing something like this.  Trust me, you can.

I'M SO EXCITED!  I'M SO EXCITED!  I'M SO...EH I'M NOT REALLY SCARED.  

 

Obligatory.

So as I write this early on Monday morning, my current mood is: Excited.  I have no idea why.  I think I'm really messed up, but I'll just have to wait a while to deal with all those issues.  

I'm excited because now boring recovery week 5 has been turned into Awesome Week of Figuring Out What the Hell is Going On.  The problem with running a good cancer blog - aside from the necessity of getting cancer to run one - is that you gotta provide a relatively steady stream of content, and by week 11 of cancer and cycle 5 of chemo, you kinda sorta run low on things to say.  

But alas, along comes U-M Hospital to give me a Neupogen shot to the blog.  I got all sorts of things planned for this week.  I will be speaking with Dr. Anderson and Dr. Li again early this week.  I'm hoping to head up to U-M today to collect my tissue and the various reports.  I'll be getting in touch with Dr. Al-Katib to inform him that the shit just hit the fan and knocked it off the table which resulted in feces being flung all over the room in various directions by a broken fan.  I am exploring the option of sending my slides to yet another hospital to get yet another recommendation.  I have received some suggestions on this point so far (thanks all), and I'll be talking with my doctors to get some more information on that issue.  The issue is that Burkitt's is not very prevalent in the US, so I am trying to find the health system that has the most experience treating patients with Burkitt's lymphoma (and differentiating between Burkitt's and B-Cell cases).

All of this, while certainly not ideal, is rather exciting.  I don't like uncertainty, but that will be greatly reduced as this week moves along. 

And what I ask myself is this:  Would I have been better off if I never went to U-M?  I didn't really have a great reason to call U-M four cycles into chemotherapy.  I've been happy with my treatment at Henry Ford.  I called U-M once on a Friday, left a message, and then called back the following Wednesday just because I was bored.  And then they had one opening on October 12, and nothing else until November.  

So if I had never gone to U-M, I certainly would have been happier right now.  I wouldn't be dealing with all of this uncertainty and stress.  But would I really be better off?  Definitely not.  I'd almost certainly be worse.  Cancer is the ultimate "what you don't know can kill you" thing.  And lymphomas are tricky; mine especially.  I thought - and I still think - that Dr. Anderson and Dr. Al-Katib are fantastic doctors, but at the very least, U-M entering the picture will force them to defend their decisions, and will provide us all with information and an opinion that I didn't have before.  The way I see it, I have and only want one shot at this thing.  So having every avenue examined, considered, and debated is absolutely critical.  Nobody wants to have regrets in life.  But when "regret" can manifest itself as a brain tumor 15 years down the road, the stakes are a little higher.

So just like my original diagnosis, the time for disappointment and sorrow ended before I even got off the phone.  I still have no time for those things.  Like so much other self-induced negativity in this process, those things do absolutely no good.  And really, the "worst case scenario" now is a million times better than the "worst case scenario" then.

I don't have time to sit around and sulk.  I don't have time to wait for doctors to call me and tell me what I should do.  It's October 25.  I have a December move-in date on an apartment in Washington, DC.  My girlfriend is already out there.  I have a January start date for a new job.  Cancer had its time.  I really do thank its lovely secretary for her exquisite post-bar exam, pre-job scheduling work.  But I'm on a schedule too.  This was my life, and it still is.  The only reason I am mildly tolerant of this whole ordeal is because I didn't have anything better to do with my time and I thought that beating cancer would be an interesting story to tell people in the future.  I haven't the slightest care for what this thing wants to call itself, because whether I need to take R-CHOP in the arm, nuclear blasts to my chest, injections in to my spine, or IVs in the hospital, it's going to GTFO by the time I put on a funny little hat and watch a ball drop in Times Square. 

You're chapping my ass, cancer.  And I'm not the least bit amused by this Houdini shit.  It was fun while it lasted.  But your clock is ticking.  Not mine.