You just can't win, Phil

[Nothing definitve on the cancer front yet, but should have an update by Monday.  In the meantime, enjoy more sad Detroit stories].

A lot of people have turned their backs on Detroit in the past several decades.  I really don't blame most of them.  But Phillip Cooley hasn't.  Who's Phillip Cooley?  He's the owner of Slows BBQ in Detroit.

Slows has been insanely successful since its opening in 2005, drawing people to Detroit who otherwise simply wouldn't be there, and even featuring in a New York Times piece on Detroit entitled "Detroit's Renewal, Slow-Cooked."  As elected officials in Detroit have lied, cheated, stolen, and masturbated their way out of office or into prison, Cooley - a private business owner - has done things like this:

To make sure the positive change takes hold, Mr. Cooley has parlayed the good will of his barbecue joint into a restless pursuit of community-building. He advises other business owners on everything from liquor licenses to using salvaged lumber. Most people in Detroit who are involved in food — or art, or music, or night life, or civic service — have brushed up against him at some point, a function both of how involved he is and how interconnected the city is.

Mayor Dave Bing appointed him to be a chairman of his Detroit Works Project, a major initiative to map the future of the city. It is one of a half-dozen boards that Mr. Cooley serves on, including the Greening of Detroit and the A.C.L.U. of Southeastern Michigan. The scale of his activity as a restaurateur-turned-do-gooder would be rare anywhere, but it particularly stands out here.

All while making money through voluntary, consensual business transactions.  A novel concept, I know.

So what does Mr. Cooley receive for doing more good in the City of Detroit than so many others, residents and non-residents alike?  Criticism, of course:

Homeless feel shunned in Corktown
As the area revives, poor say they are being pushed out

Detroit— Delbert Stinson has lived in Corktown for 15 years without a home. When it's cold, he sleeps in shelters. On summer nights, he sometimes crashed on a bench in Dean Savage Memorial Park — until this year, when vandals ripped out its benches. Gone, too, are nearby tree branches that used to provide Stinson and his companions with shade; someone sawed them off.

"Some people don't like having us around," said Stinson, 46.

And some blame newcomers.

Corktown in Detroit is an interesting place.  It's the former home of Tiger Stadium and current home of the abandoned Michigan Central Depot.  It is also where Cooley opened Slows in 2005.  And for that, he receives this:

Concern is so great that 40 neighborhood residents recently met to discuss their concerns. Some of the homeless, including Paul Gibson, blame Philip Cooley, the co-owner of Slows Bar BQ, who has gained national attention for his efforts to redevelop Corktown.

"It's a culture clash," said Gibson, 50. "This neighborhood has a lot of (social service) agencies; that's why there's a lot of homeless people. It's been like that for a long time, but some people want to get us out of here."

Cooley acknowledged he's heard the accusations but said he's baffled by them.

"This is coming from a bunch of crazy people who just like to complain," said Cooley, who also is co-owner of O'Connor Development.

The article is actually rather well done and quite interesting.  There is - or at least appears to be - a tension in the Corktown area between newcomers and the sizable homeless population.  The homeless population is drawn to the numerous charities and churches in the area that provide free food, clothing, and shelter.  Tensions apparently increased after an October beating of a homeless man by a homeowner, although the fact that one assault allegedly led to this tension seems implausible in a city that sees thousands of crimes every day.

Oh, but poor Phil. Even when you try to win, you can't win:

"Look at my track record: A homeless guy lived with me for eight months. I hired a homeless man for the restaurant, but I had to fire him when I caught him shooting heroin in the bathroom. I hired another homeless guy (for his construction firm), but he stole all my tools. When I caught him, I didn't beat him up — I tried to get him help."

This is how Cooley defended himself against charges that he hates the homeless.  By telling us about two homeless guys who he tried to help, and got burned both times. I'm assuming there weren't any better stories he could conjure up.

Here's what Cooley has precipitated in Corktown:

Six restaurants are scheduled to open in Corktown this year. The city's first hostel in 15 years is slated to open in April.

Cooley has proposed developing a section of Roosevelt Park, across the street from the abandoned train station; he envisions a skate park, amphitheater and a playground. Cooley has renovated other buildings in Corktown and said he plans to launch more projects nearby.

You can't say that about too many places in Detroit.

But that angers some people.  Even actual residents of Corktown:

Resident Elisa Gurule called the tension in Corktown a battle "between the haves and the have-nots."

"When people come into Corktown with ideas about how it should be, rather than how it is, I take that personally," Gurule said. "Whether people sleep under trees, in the park or in their homes, they still live in this neighborhood.

"Corktown is more than just cute gingerbread houses and cute little restaurants. You can't come in here and start changing a neighborhood to fit your vision, if it doesn't include everybody who's already here."

...Resident Tom Allenson recently wrote an "Open Letter from the Corktown Community," in which he asked: "How can we balance the rights of the homeless against the stresses their presence puts on a community?"

I'm not exactly sure what "rights" the homeless are claiming to public land or free handouts, but I get the point.  Maybe they are claiming their right to poop wherever they want:

DeBruyn said some of the complaints about the homeless are valid. One woman he described as mentally ill is well-known in Corktown for defecating near residents' homes — and she isn't the only such offender, he said.

"Defecation is a constant theme of our lives," he said. "One community member just spent $100,000 on his house, and people keep using the bathroom near the entrance to his garage. That's making him crazy."

If you find yourself uttering the phrase, "Defecation is a constant theme of our lives," you might want to reevaluate where you live.  But God bless these people, they haven't.  When others gave up - and hell, if "defecation is a constant theme," who can blame them - Cooley didn't.  Neither did 29-year-old Jerry Paffendorf, who is mentioned in the article as renovating abandoned buildings in Corktown.  They went where nobody else would go, took over nothing, and turned it into something useful.  And for that, they have to defend themselves:

"We own five buildings that were completely abandoned, and we developed them," Cooley said. "I don't know why that's a problem. I'm not looking to gentrify Detroit. You can't discriminate against those who come in and want to do positive things for the community."

...It makes me sad," [Paffendorf] said. "The last thing I want to do is gentrify Corktown. The homeless are part of this community; nobody's trying to drive them out. I'm not seeing it."

I find it a little funny that two people responsible for gentrifying Detroit and Corktown are standing athwart reality and screaming, "We're not trying to gentrify!!!", but it's cool.  

***

I'm not exactly sure how Phil Cooley could win here.  Perhaps he could follow the path of so many others (like yours truly) and leave the state (although, in my defense, I did spend a substantial portion of my law school career attempting to fix a series of blunders by the Detroit Police Department and Wayne County Prosecutor's Office and presenting them with a nearly gift-wrapped homicide case, for which my fellow clinic members and I were rewarded with accusations of witness tampering and nearly forced to testify against our client).

And while I'm all for private charity, there's something definitely wrong if homeless people are more distraught about a neighborhood revitalization than they are about the fact that they are homeless.  I haven't been homeless, so take this with a rock of salt, but I imagine it's not a very pleasant thing.  The first guy interviewed in the piece has been homeless for 15 years.  I don't know the dude's situation - maybe he's mentally ill, although it doesn't seem that way from the fact that he's giving coherent quotes in a newspaper article.  And I'm sure there are reasons for his current predicament.  But damn, 15 years is a long time to fill up with excuses, especially with all the charity available in Corktown.  At some point, man, it's on you.  

But on a broader note, what the hell, Detroit?  This is one of those articles that has the potential to make anyone interested in moving to or opening a business in Detroit say, "Screw this. It's not worth the trouble."  What's somewhat stunning (although not at all if you know anything about Detroit) is the number of actual Corktown residents that seem to be siding with the homeless crowd.  It's one thing to give charity to people less fortunate.  It's quite another to resist people who take over abandoned buildings and turn them into something useful because they are "changing" the neighborhood.  I mean, I guess you can.  But then you get the town you deserve.  And I'm not going to feel bad or guilty about it.

Moving forward, not backward; upward, not forward; and always twirling, twirling, twirling toward a conclusion!

Obligatory with title.

So...gah.  It's been a few hours, and I got nothin really.  There was a point in all this after which I just began to expect stuff like this to happen, so I really can't say this is tearing me apart.  I sorta just sit there now and concoct fun ways that I can get non-answer answers and confusion-exacerbating recommendations.  But reality just stays three steps ahead of me.  Man, I wish I was talented enough to make this stuff up. 

Some clarifying points here:  First, we have two "more treatment" options in play here:  The "systemic chemo" that Dr. Li referenced, and the "intrathecal prophylaxis" that Dr. Anderson was referring to (and Dr. Li mentioned).  Systemic chemo is basically what I had - chemo drugs through an IV, although this time around, I would be receiving more intense drugs at higher doses.  Intratheical chemotherapy refers to the injection of chemo drugs into the spinal fluid.  This is done because the R-CHOP drugs do not penetrate the central nervous system, and this can be an issue when you are dealing with a rabid lymphoma like Burkitt's. 

I wouldn't read too much into the two e-mails.  Dr. Anderson's e-mail is actually a reflection of his personality, the way he answers questions (very comprehensively), and his point of view on the situation.  But I don't think Dr. Li's shorter, more succinct e-mail is indicative of a lower level of concern for my case.  For starters, Dr. Li is not a native English speaker (although she speaks very well), so that alone probably has an impact on the length of her e-mails (and Andrew Lang references).  But I have roughly 20 e-mails in my inbox from Dr. Li, many of which have been sent late at night, on the weekends, or while she was out of town.  I'm relatively confident that few patients in the history of cancer have had the personal e-mail addresses of as many doctors as I have.  I have no question that my main doctors - Dr. Li, Dr. Al-Katib, and Dr. Anderson - have my best interests at heart. 

But Dr. Anderson's e-mail really does capture the essence of the issue.  Particularly this part:

Some of our learned colleagues seem hung up on the prognostic implications of the possible Burkitt diagnosis (and as we have discussed, this is a fuzzy category), but there is really little predictive data on CNS outcomes for early stage in complete response, absent non pathology-based higher risk features (age, location, etc).

Each doctor fully admits that there just isn't any clinical data on my particular case, with my particular risk factors.  Dr. Li and Dr. Anderson are looking at the exact same stuff.  Dr. Anderson places a bit more emphasis on my favorable risk factors (location of tumor, age, health, response to treatment, stage); Dr. Li places a bit more emphasis on the statistics showing a relatively high rate of CNS relapse.  The important thing that I've come to realize is that these two positions cannot refute each other.  The absence of good data means neither side can prove the other one wrong, or even sway the opposing party.  Everyone is looking at the exact same stuff, and the side you come out on might have more to do with the side of bed you woke up on than any relevant medical information. 

That is why I sort of expected this result.  I wanted to (and did) use Dr. Zelenetz (from Sloan-Kettering) and Dr. Advani (from Stanford) in different ways.  I wanted Dr. Zelenetz to review my medical records independently.  I didn't want him talking to my doctors.  I informed him of the situation, but I wanted his unbiased opinion.

On the other hand, I wanted Dr. Advani to hear both of my doctors and see what she thought.  I was hoping to speak with her directly, but that didn't happen, so fine.  But given the situation as it was, I expected Dr. Anderson to say something like this:

I spoke to Dr Advani last week. Basically she explained how they treat new Burkitts, that they include IT ARA-C (Depocyt) x6. What to do in your situation is not as clear, basically she said if it really is Burkitts, they would consider IT treatment, acknowledging that this is not risk free.

While Dr. Li said something like this:

I spoke with Dr. Advani last week and she said that she would agree with me on doing more treatment.

I think both of those third-hand statements are true until the point that they're not, if that makes any sense.  I don't doubt either of them, but I can't help but noticing that each conversation (with the same doctor) matches what Dr. Li and Dr. Anderson already thought.  Dr. Li's seems gung-ho on "more treatment;" Dr. Anderson's report expresses deep contemplation and concern about that very same option.  So I read those e-mails, and I'm not terribly surprised by the result because I'm sure both doctors a) framed their conversations in terms favorable to their own conclusions (for example, Dr. Li probably described me as a Burkitt's lymphoma patient, while Dr. Anderson probably described me as a diffuse large b-cell patient), and b) interpreted Dr. Advani's statements as supporting their already-held conclusions. 

If my life weren't quite literally on the line here, I'd be fascinated by psychological implications of the whole ordeal.

***

Now we get to the million dollar question:  What do I do?  And for the millionth time, I don't know. 

But it's really not eating at me like it used to.  If you get kicked in the stones enough times, numbness dulls the pain, and I think I'm there.  At every juncture, I expect not really the worst, but another insane, confusing, and frustrating turn.  I come out every week and say, "this is the week!", but I don't think I really believe it.  As I've come to realize more and more lately, this stuff is never over.  I've had more contact with my doctors than most patients could ever imagine, but it's still incredibly frustrating trying to get a hold of people sometimes.  All of this happens enough that you just begin to tune it out after a while.  Otherwise, I wouldn't be able to drag myself out of bed in the morning. 

Back to the decision:  I just want to do the right thing.  I'm fully aware that neither I nor anybody else knows what the "right" answer is, but the right answer is different from the right decision.  But my goal is just to take all the information I have, along with all the limitations, and make the best decision possible. 

Given all that, I actually think it will be possible to get this worked out very soon.  It won't be in the way I wanted - when you're dealing with cancer, not much is.  But I have become exponentially more comfortable with my current situation in recent weeks.  And because I'm fine with not being able to attain my cut and dry, consensus answer, I'm more able to process the absurd amount of often-conflicting information I'm receiving to figure out the best thing to do.

At a more basic level, however, you just have to have faith.  You can have faith in God or faith in the universe.  Both are fine.  Me, I just have faith.  In whatever.  You have to step back, look at your situation, realize just how terrible at actually is while at the same time realizing how much more terrible it could be, and learn to live with it.  Cancer is a million times worse than "not cancer."  But I'm a million times better than what could have been.  Coping with this means gaining the ability to look at both of those absolutely true facts and live with them both at the same time. 

***

Dr. Anderson asked for a crystal ball that would allow him to see which patient would be better served by which type of treatment.  Unfortunately, medical science hasn't developed that tool yet.  But on this planet, at this time, in my position, I can look back at what I've done these past six months and honestly tell myself that I left no stone unturned.  For better or worse, and regardless of the confusion, I really believe I handled this the right way.  Sometimes, that sucks because reality is tough to deal with.  But it's a hell of a lot better than not dealing with it, or, even worse, dealing with it when it's too late. 

If I do more treatment, I'll be fine.  If I don't, I'll be fine.  If I punt the decision, I'll be fine.  I've written thousands of words on the monster that is cancer, but there's nothing like the feeling of trying to close a door, only it won't close, and you spend the next decade or so praying to God nothing comes through that door.  You've just been through a horrific experience, you hear the word "remission," you want to celebrate, but all you're left with is a nagging emptiness. 

But like everything else associated with this disease, you don't have much of a choice.  You get used to it.  And I will.  And I'll figure out what to do one way or another.  But while I'm doing that, I will always remember that cancer didn't beat me.  And I'm sure as hell not going to beat myself. 

I was going to conquer the world today/but then I just threw up

Remember that "same page" stuff?  Yeah...not so much.

Dr. Anderson, via e-mail:

I sometimes wish they issued a crystal ball to better know what patient would be best served by what treatment. Some of our learned colleagues seem hung up on the prognostic implications of the possible Burkitt diagnosis (and as we have discussed, this is a fuzzy category), but there is really little predictive data on CNS outcomes for early stage in complete response, absent non pathology-based higher risk features (age, location, etc). Since ancient times when there is uncertainty the tradition is primum non nocere (above all, do no harm). Medicine is easy when everyone agrees (which doesn't necessarily mean they are right), it gets unnerving when there are differing points of view. But thats the way it is, quite often.

Andrew Lang (1844-1912) once commented on using statistics like a drunk uses a lamp-post, for support, rather than illumination. (Great insight). Often in medicine thats how consultants end up being used. If an expert opinion is based on new science or a different angle not previously considered, then it may be illuminating. Otherwise if we've done our homework we gain little; typically if there is agreement, the support is by itself valuable, for peace of mind. However if differing points of view, then sometimes all that is added is confusion and anxiety.

I have attached the adverse reaction section regarding liposomal cytarabine from clinical pharmacology online to illustrate that this is not a benign drug. Have I used the drug? Yes. Do I like using it? No. Have I helped people with it? Yes. Have I hurt people with it? Yes. What am I more worried about going forward in a hypothetical patient, their R-CHOP or their intrathecal chemo? Frankly in some cases its the latter. I think my own reservation in your case is based on my personally observing neurotoxicity in similar situation.

I spoke to Dr Advani last week. Basically she explained how they treat new Burkitts, that they include IT ARA-C (Depocyt) x6. What to do in your situation is not as clear, basically she said if it really is Burkitts, they would consider IT treatment, acknowledging that this is not risk free. (However in non Burkitts, they don't).

I have been busy soliciting opinions from my end. Our own HFH internal discussions were that most colleagues could understand why IT chemo might be considered, but probably wouldn't pull the trigger themselves, especially after I presented the counterarguments.

So where does this leave you? Hopefully at least better placed to understand the pro's and con's. Basically right now its an educated guess. If I had the only vote, I would say to just watch, see what the next PET-CT shows. In the meantime try to forget about all of this lymphoma business, focus on job, Brady Hoke, Florida Keys or some other warm spot.

Dr. Li, via e-mail:

Hi Nick,

I spoke with Dr. Advani last week and she said that she would agree with me on doing more treatment. We agreed on the following:

If the restaging PET 6-8 weeks post radiation is still residue positive, then we definitely need to do more systemic chemo with introthecal prophylaxis. If it is negative, then it would be OK to do introthecal only with minimal 6 doses.

I didn't speak with Dr. Anderson so I'm not sure if he is in agreement with this plan. May be Sarah meant Dr. Advani and I are on the same page?

Qing

As the saying goes, if you put enough monkeys in a room with a typewriter, they'll produce Shakespeare.  Well if you put the world's best fiction writers in a room, I'm not sure they could come up with something as messed up as this whole ordeal.

I'll probably have more thoughts on this later.  But for now, this all I got. 

Our long national nightmare is over*

It is with great pleasure that I announce that the most challenging, difficult, and frustrating period of my life is now over:

And just like that, I have beaten the two most significant opponents I have faced in the last six months: Maryland*** and Comcast.**

*(Contrary to the title of this post, my long national nightmare is very much not over.  The reason?  I have to waive into the DC Bar.  What does that entail?  Repeating virtually the entire process of getting admitted to the Maryland Bar, minus the bar exam and interview, plus a more annoying and comprehensive application, which one of my coworkers referred to as "possibly the most painful process I've known."  I'm terrified that I will be able to say the same thing in a few months, even though I've experienced a bone marrow biopsy).

**(No joke here.  The odds of me failing the Maryland Bar were much greater than me failing to beat cancer.  And the odds of Comcast screwing things up were far higher than my chances of failing to attain remission).

***(I wrote this post late on Sunday night with the intention of posting it Monday evening.  Twelve hours after I wrote that I had "beaten" Maryland, Emily and I were sideswiped by a Maryland driver on 395.  Emily and I are fine; the car suffered barely visible damage, which was pretty stunning for a 60mph collision.  You think I'd learn my lesson about gloating on the blog by now. If it had been a Comcast truck that hit us, I'd be hiding in a fallout shelter). 

This is the song that never ends...

The doctor charade continues.  After some promising news on Thursday and Friday, I've heard nothing in the past 72 hours. 

I did speak with Dr. Anderson's assistant on Friday who told me that Dr. Anderson did indeed speak with Dr. Advani (Stanford), and he would be e-mailing me on Friday afternoon.  I assumed that, had Dr. Anderson changed his mind and suddenly switched to the "more treatment" side, this news wouldn't be conveyed to me via e-mail. 

But no e-mail ever arrived, so that's where we sit at the moment.  To be honest, I really don't care that much.  I'm perfectly fine with where I am at the current moment.  I've fully processed the whole "living under the gun" thing, and I'm fine with that.  That's just the reality of my life right now, so there's no point in worrying myself to death. 

Pragmatically, of course, this matters quite a bit.  If Dr. Li no longer things more treatment is the best option, then I really don't have to do anything besides feel better about my situation.  But if Dr. Anderson is now on team more treatment, then I sorta have to get on a plane and start chemo.  Like...now.  And if the two doctors are still split and the "on the same page" thing wasn't completely true, then I need to know where Dr. Advani stands on things.  Either way, I would like to speak to a doctor please. 

(A note:  I can see people saying to themselves, "Isn't it terrible how these doctors never get back to him," or something like that.  And while it does suck for me, my case is very, very abnormal.  By that, I don't mean that not being able to get a hold of a doctor is abnormal, because it's terribly difficult to do that.  But I have had far more contact with more doctors than virtually any other cancer patient in the world, and I'm not hyperbolizing.  It's generally a matter of policy not to give out e-mail addresses or direct phone numbers to patients; I have e-mail addresses for most of my doctors and can reach at least an assistant whenever I need to.  The amount of contact I've had with my doctors is incredibly abnormal and I realize that.  So even though this is important stuff, I try not to abuse the access I've been given.  I know people have gone out of their way for me).

So as of now, that's my goal: to get a hold of Dr. Anderson or Dr. Li ASAP.  There is a point after which the more treatment option becomes moot, so there's some slight concern there.  But both of my doctors know the situation, so I'm not terribly worried about that.  If my docs decided that more treatment is the best way to go, they're not going to not say anything to me.  They might just not contact me as quickly as I want. 

Either way folks, this has got to be it.  This week, at least.  I can't think of any possible way this thing drags out any longer.  So I'll know something this week, and hopefully I can put this to rest either way.