Hello, friends: I Have Scleroderma

Over the coming months, you’ll see photos and social media posts from me in hospitals and clinics, and wonder what’s going on and why I’m interrupting your aunt’s very important stream of political conspiracy theories. Well, I have a story to tell that should clear some of that up so you can get back to learning about the lizard people who ACTUALLY control the world’s governments. Or something.

Tl;dr: I have scleroderma, which has been bad to my body, and I’m in Chicago undergoing a stem cell transplant to try to reboot my immune system.

Back in August 2015, I was diagnosed with scleroderma, an autoimmune condition in which the body attacks its own tissues. In the more common variants of the disease, the body’s immune system attacks the skin and connective tissue, hence the name of the disease, which is Greek for “hard skin”. (You can learn lots more about the disease at the Scleroderma Foundation website.)

In my fun, sexy flavor of the disease, known as diffuse systemic sclerosis, my body has been attacking my lungs, heart, and digestive tract in addition to my skin. It’s caused inflammation in my lungs (interstitial lung disease), leading to fibrosis that has knocked out half of my lung function. It’s darkened and stiffened my skin slightly. It’s weakened my esophagus, so I can’t do that neat trick where you can eat something while hanging upside down. And now it seems to be stiffening the chambers of my heart, which is…not great. If it had been left untreated, I would have had maybe 3-5 years left, given how rapidly my symptoms had progressed.

Immediately after I was diagnosed, I was referred to the rheumatology team at the Scleroderma Center at Johns Hopkins University Medical Center. I was put on a heavy course of the immune suppressant Cellcept to weaken my immune system to slow or halt the progression of the disease. And it worked for a while.

This past April, I saw a talk by Dr. Richard Burt, an immunologist at Northwestern University, who has been researching a pioneering treatment for autoimmune diseases called the Hematopoietic Stem Cell Transplantation (HSCT) for a variety of autoimmune diseases. The field has been making steady progress for 30 years, especially giving relief to multiple sclerosis patients. And for the past 15 years, he’s been treating Scleroderma patients as part of a long term trial, which has shown some notable improvement in patients’ skin and organ involvement. It’s not a miracle cure, but it’s given a number of people a much better quality of life.

I went to Northwestern in September to see if I might qualify for the trial. The procedure is intense (more on that later), so they don’t take patients who are in the late stages of the illness—it’s definitely not a last resort. During the screening tests (3 days of stabbing, x-ray shooting, and imaging), I learned that my heart tissue was also now showing signs of stiffening. I didn’t have a lot of time to lose if I wanted to go through with the treatment.

The HSCT process

So that brings me to Northwestern University Medical Center in Chicago today. Over the next six weeks, I’ll be going through the HSCT procedure, which will basically wipe out and reinstall my malfunctioning immune system, like you might do with a jacked-up computer. It’s also largely the same procedure as modern bone marrow transplants. Here’s how my journey looks over the next few months:

  • First, this Friday, I undergo a quick dose of chemotherapy to help coax my body into producing and releasing stem cells into my blood stream.
  • Ten days later, I get hooked up to a machine that harvests millions of stem cells from my blood stream and deposits them into a plastic bag of pink goo. Delicious! These stem cells get frozen and stored until after my mutinous old immune system is wiped out.
  • After Christmas, I’ll be admitted to the hospital to start a round of 6 days of chemotherapy to crush the immune system rebellion and wipe out all of my leukocytes. I will be forever known as a ruthless leader, and future immune cells and proteins will know better than to trifle with me.
  • On January 4th, I receive my harvested stem cells on what HSCT patients refer to as their second birthday. I haven’t received word about cake, but there ought to be cake.
    For a couple weeks after that, I’ll be kept in the hospital for observation until my immune system has effectively re-grown.

    From there, I’ll spend a few weeks recuperating with family, and hopefully be back in New York by March. I’ll be working remotely for part of this time, but I promise I’ll totally binge watch that show you told me I HAVE to watch. Definitely top of my list.

    Anyway, that’s my story. Your thoughts and/or prayers are very much appreciated. Some of you may be wondering what you can do to help. I’ve actually been fortunate along this journey, in that I’ve had access to great teams of doctors, mountains of information, and a network of friends and family who’ve looked out for me along the way. And also a wife who keeps nagging me to “wash my hands” and “remember my pills” and “not eat that thing off the floor because the five-second rule isn’t a verifiable scientific theory.”

    A lot of people don’t have these things, and a cure is a long ways off besides. The Scleroderma Foundation is working to support existing patients and to find a cure in the future. For those who want to help, consider contributing to their efforts here.

  • top 10s of 2013

    It’s been a while since my last musical listicle, but for posterity, here are the top ten artists, albums, and tracks of 2013, as measured by last.fm. Not much to add for commentary, except that * indicates artists with new albums.

    Top Artists

    1. Josh Ritter*
    2. Matt & Kim
    3. JJAMZ
    4. Beirut
    5. Matt Costa*
    6. Arcade Fire* — Though Reflektor is unbelievably tedious.
    7. The Walkmen
    8. Metric
    9. Tokyo Police Club
    10. She & Him*

    Top Albums

    1. Josh Ritter • The Beast In Its Tracks* — A really earnest account of the demise of his marriage, and his recovery from the aftermath.
    2. JJAMZ • Suicide Pact — I’ve become a sucker for 80s-throwback pop with distorted synth. But I draw the line on 80s nostalgia at Haim, whom I just can’t get into.
    3. The Walkmen • Heaven — Weird that this appeared so low. I realized with this album that I basically grew up a step behind Hamilton Leithauser & Co., and that Heaven is my queue that I’m a grown-up, too.
    4. Matt & Kim • Lightning — A side effect of my working for a company in the music industry, they turned out to be really nice people, and this is a really fun album.
    5. Matt Costa • Matt Costa* — After years of being heckled by last.fm, I finally listened to his new, self-titled album. My wife refuses to believe that he is not a Nick Drake-influenced time traveler from 1970, and that’s pretty much why I enjoy this album.
    6. Metric • Synthetica — It’s an album that goes back to their darker electronica roots and has held up surprisingly well.
    7. She & Him • Volume 3* — Not sure if I’m tired of their sound, or if this album is naturally underwhelming. But it just didn’t get into my iTunes rotation as often as Volumes One or Two.
    8. Capital Cities • In A Tidal Wave of Mystery* — This is proof that I’ve drifted a long way from the days in college when I was pulled between the disparate influences of Eric and Kari. So much dance pop.
    9. Neon Indian • Era Extraña — Ditto. Thanks a lot, Nimisha.
    10. CHVRCHES • The Bones of What You Believe* — My new thing is pronouncing the “V” in CHVRCHES. They are possibly the first band to choose their name by search engine optimization.

    Top Tracks

    In the format {Track • Arist • Album}. Limited to one track per artist.

    1. Synthetica • Metric • Synthetica
    2. Heartbeat • JJAMZ • Suicide Pact — MySpace didn’t get me to use their service again with their reintroduction video/ad, but they did give me a new artist.
    3. We Can’t Be Beat • The Walkmen • Heaven
    4. Bushwick Blues • Delta Spirit • History From Below
    5. Jesus, Etc. • Wilco • Yankee Hotel Foxtrot
    6. Mr. November • The National • Alligator
    7. Breakneck Speed • Tokyo Police Club • Champ
    8. MoneyGrabber • Fitz & The Tantrums • Pickin’ Up the Pieces
    9. Rox in the Box • The Decemberists • The King Is Dead
    10. Keep the Car Running • Arcade Fire • Neon Bible

    Highlight of my year

    Look at me, ma—I’m an influencer. Where’s my scout badge?

    NFL choke artists

    My friend and evil waster of my work productivity Will recently replied to one of my numerous defenses of Cowboys QB Tony Romo with the following harrumph:

    I’m sorry dude, but his QB rating notwithstanding, Romo’s CV is full of ill-advised throws in the 4th quarter. More than I can remember. Are they exclusively his fault? Of course not, but he’s the QB and should accept complete responsibility. His legacy to date is that of a choke artist. I love and root for the guy, and he’s a great fantasy QB, but IRL he has some issues.

    Let’s leave aside the “complete responsibility” aspect, because it’s ridiculously broad and is exactly why sabermetrics and value-above-replacement metrics were created. The perception that Romo—he of the 100+ 4th quarter & overtime QB rating—is weak in the clutch is just not true. I decided to dig further into the numbers to pull out a couple of specific periods in a given game: 5:00 left or 8:00 left in the 4th quarter, and situations within those timeframes where the game is within one score (+/- 8 points). These cover the 7.5-season period since Romo became a starter, and includes the best seasons most of these guys have had (including Brady’s 18-1, the Mannings’ 3 combined rings, etc.). I also limited the analysis to players who own a SB ring, because of Will’s earlier contention that the exclusive hallmark of a great QB is a ring.

    The numbers don’t show that Romo is the Greatest of All Time candidate, but they certainly show that he’s no worse than some established candidates for GOAT.

    Late Fourth Quarter

    In the last half of the fourth quarter, Aaron Rodgers and Peyton Manning are the gold standard, and you’ll see them stay that way throughout these stats. When you limit the scope to one-score games, Kurt Warner and Eli Manning do pretty well, too. Romo’s in the middle of the latter pack, he’s been put in close, late-game situations more than any other QB, save for Ben Roethlisberger. Incidentally, Roethlisberger has been sacked way more often than anyone else on this list, as defenses seek to treat him the way he treats the ladies.

    The frequently made comparison between Romo and his (and Nies’s) boyhood hero Brett Favre just makes Romo look considerably better in tight games: Favre is tied with Eli for the worst interception percentage, and has dismal accuracy to boot. And then there’s Tom Brady, who comes in dead last in passer rating the last half of the 4th, and is especially bad in close games. More on this later.

    Last Five Minutes

    But when you think “clutch”, you’re likely thinking of the last drive or two in a tight game. The last 2 minutes are often just kneeldowns after the other side failed to perform in the fabled clutch situation, so I expanded the time to include the last five minutes—enough for the final two drives of the game.

    In the last five minutes of any game, Romo comes in as the third-best QB in the list of Super Bowl-winners he’s snuck into. BUT WAIT—THE CLOSE GAMES SHOW HOW HARD HE CHOKES ALL THE GAMES AWAY!!11 Not so fast. There are a couple of factors at play:

    • First, again, Romo is put in close end-of-game situations more often than most other quarterbacks here. And these numbers don’t even count comeback attempts from 2+ scores down, where Romo has a 95.7 rating for his career and a 100+ passer rating in each of the last 4.5 seasons.

      Note that the only guy with as many attempts in those situations is Big Ben, who holds onto the ball long enough to get sacked twice as much as the next guy here. (Even calculating on a per-season basis, Big Ben gets sacked 50% more than Flacco.) He’s losing yardage to the turf instead of turning the ball over, but both hurt the team in tight situations. To wit: if you’re constantly forced to try to make things happen, sometimes those things will be bad.
    • Second, let’s point out that in both sets of close-game numbers, Romo is among the most accurate QBs. (This holds true against non-SB winners, as well.) Unlike, say, Eli or Easy Hands Ben, Romo is finding ways to get it to his receivers. However, his high accuracy combined with the INTs back up my lament about poor route running: this is a guy whose receivers are using compasses to navigate a magnet factory.

      If you want a guy who really did carelessly chuck the ball down field, look no further than Brett Favre. His spectacularly bad completion rates and high interception percentages show a guy who was hoping to will the chains forward…and often failed. Since 1999 (the earliest game situation stats Pro Football Reference has available), Favre has only completed 53.1% of his completions with a 57.7 passer rating, so this isn’t a case of a star on the downswing. This is who Brett always was.

    Other Factors

    There are three other key factors in clutch QB success, both relating to other people as you might expect:

    • First, the strength of the running game makes a big difference when you’re maintaining the lead. Roethlisberger, Favre, Flacco, and the Mannings get help for all or part of this sample set. On the other hand, when you have to decide between Tashard Choice and Felix Jones, you lob it to Witten in the flat.
    • Second, there’s the gift of a strong offensive line, which can turn a run-out-of-town Alex Smith into an undefeated Alex Smith. Eli Manning and Joe Flacco have had arguably had good protection in front of him every year until this year—with predictable results. If Romo couldn’t run, he would now be David Carr with nicer golf clubs.
    • Finally, there’s the defense, which I started to look at further. In both close game situations, Dallas’s defense has performed in the bottom third of the league in both % of plays resulting in a first downs and % of plays resulting in a turnover. Other QBs at least have the luxury of defenses that hold tough (like the Giants and Steelers) or get the ball back (Patriots, Colts, Saints), so they can afford to be choosy with their pass plays.


    That was a lot of words. Here’s the most important selection of those words:

    • Tony Romo is not the Clutch God of Lore, but he certainly fares better than some of the most celebrated QBs in the league. Where he is forced into turnovers, he is frequently bailing out terrible defensive performances only to be undone by poor route running and the occasional O-line sieve.
    • Aaron Rodgers and Peyton Manning are pretty damned good in the clutch. Kurt Warner is actually really underrated, considering he did some great work in close games with the Arizona Cardinals.
    • Big Ben’s passing progressions really do take as long as they seem to.
    • Tom Brady is shockingly bad late in close games. There are definitely some missing variables here. The Pats’ defenses during these years got much more lax than in the early Belichick years, so these may have been games with complete defensive collapses. I also suspect that some of it is because he’s rarely had all-star receivers, but these games include some of his most prolific passing years. It’s possible that since 2006, the Pats don’t even know how to win without blowing teams out (cf., the rainy Bengals game).
    • Brett Favre really did play like a kid out there. A moody, undisciplined kid who really just wants you to look at his junk.

    your parliamentary procedure sucks

    I’ve seen about a million Facebook posts and tweets about the democracy-suspending, Reichstag-burning coup the Tea Party Republikkkans brought about on October 1, citing the YouTube video of Representative Chris Van Hollen (D-attention) standing in the face of Republican tyranny like a latter day Tank Man. The problem is that, as usual, it’s a whole mess of hyperbole.

    The Popular Story

    Rep. Van Hollen heroically tried to end the impasse on Saturday, October 12 by asking to bring the Senate version of the 2014 budget up for an immediate vote. The House Speaker pro tempore, Rep. Jason Chaffetz (R-UT), told him that the House had already passed a resolution (H.R. 368) that allows only the Majority Leader or his minions to bring the bill for an up-or-down vote. Rep. Van Hollen was shocked by this…though he somehow had props in his hands ready to go for this exchange.

    Then the internet exploded.

    The Actual Timeline

    Here’s the timeline of events:

    • September 20: The House passes House Joint Resolution 59, which continues funding the government for the fiscal year 2014 until December 15, 2013. This resolution eliminates all funding for the Patient Protection and Affordable Care Act (PPACA, or “Obamacare” for those of you who prefer that).
    • September 21: The Senate amends H.J. Res. 59, changing the expiration date to November 15 and stripping §137 (debt prioritization) and §138 (defunding PPACA).
    • September 28: The House passed two perfecting amendments (amendments to the Senate amendments) that 1) repeal the medical device tax, and 2) again delay the PPACA, respectively.
    • September 30: The Senate tabled the House perfecting amendments.
    • October 1: The House voted for the notorious H.R. 368. The text of the bill states that:

      Resolved, That the House hereby (1) takes from the Speaker’s table the joint resolution (H.J. Res. 59) making continuing appropriations for fiscal year 2014, and for other purposes, with the House amendment to the Senate amendment thereto, (2) insists on its amendment, and (3) requests a conference with the Senate thereon.

      SEC. 2. Any motion pursuant to clause 4 of rule XXII relating to House Joint Resolution 59 may be offered only by the Majority Leader or his designee.

      Rule XXII, clause 4 says that

      4. When the stage of disagreement has been reached on a bill or resolution with House or Senate amendments, a motion to dispose of any amendment shall be privileged.

      So when there’s a House-Senate deadlock, any motions to remove amendments (which presumably are the reason for the deadlock) get special precedence. That is, anyone can interrupt proceedings to get rid of an amendment.

      So in H.R. 368, the House resolves 1) to continue funding the government with the House version of the bill, and asks that the Senate meet for a conference committee to determine this, and 2) to suspend the rule by which any House member can interrupt proceedings to shed amendments (which is what adopting the Senate version of the bill would do) while this is going on.

    • October 12 Rep. Van Hollen asks to pick up the Senate version of the bill (the “clean” resolution) off the table and pass it. Rep. Chaffetz says no.

    In other words…

    So had Section 2 not been passed, Rep. Van Hollen would have taken a bill that was currently being debated between the leadership of the two houses of Congress and passed the other house’s version. In the unlikely event that the member of the minority would’ve been successful in the vote, he would have basically hijacked the legislative process to ram through a bill that was still being hashed out by grown-ups.

    First, yes, it sucks that this process has taken so long. In my opinion, Senate Majority Leader Reid shares some of the blame in the impasse—after all, he’s opposing a funding resolution that had more votes than the PPACA had in the first place. But regardless of your side in the budget debate, let’s admit that this is the process by which bills become law, including funding bills. If the Congressman wants to bypass conference committees, then by all means, he can pass a resolution when he’s in a leadership role (which he theoretically will be the next time the Dems have a House majority) to require a 2/3ds vote to suspend House Rule XXII. Spoiler alert: he probably won’t.

    Second, let’s correct some of the rhetoric:

    1. The House GOP did not “guarantee a shutdown” with H.R. 368. The House guaranteed that they’d be able to go a conference committee with the Senate without the bill changing or getting passed while they were in the middle of negotiating.
    2. This is not an unprecedented move. The House leadership—regardless of party—often changes the rules to make the legislative process go more smoothly. Newsflash: members of Congress want to get the hell out of the chambers quickly to get a drink as much as anyone else. Anything to get this process going faster is encouraged.
    3. This is not rigging the rules. The rules were changed by following still other rules. Was the Rep. Van Hollen gagged and tied to a railroad track while H.R. 368 was passed? How did he manage to lose seven fellow Democrats to the other side of the vote on this resolution? Only when the shutdown became real, and Rep. Van Hollen had a chance to score some political points, did H.R. 368 magically become THE END OF DEMOCRACY AS WE KNOW IT!!!111

    Finally, the fact that I had to type all this up, and could find not one voice on the right explaining that Speaker John Boehner is not an orange Snively Whiplash is evidence enough that the GOP has no idea what the hell it’s doing, and has all the strategy of a classic wildcard. With zero PR efforts on their side, this clearly was a Republican political suicide mission.

    Wedding photos!

    View this photo on Flickr

    Hey there, three people who are still reading my blog! I finally uploaded a selection of the (literally) one thousand photos from our wedding in Maryland last October. You can see them in slideshow format and find links to the full sets at our wedding website. Thanks again to our photographer Theresa Choi.

    Now, off to sort through and upload the six hundred photos from the Indian wedding…


    The Walkmen, “Heaven”

    Title track from the new album.


    Indians’ selective sensitivity

    Ah, it’s campaign season again, which means it’s time for me to hear how I should join the Brown People Bandwagon™ and support the President—like Shefali Duggal Razdan, Deven Parekh, Sunil Sabharwal and Kavita Tankha, all named by the Hindustan Times* as typically oblivious fundraisers for the President’s re-election campaign.

    Maybe I should climb aboard that bandwagon. I mean, clearly leading Indian-Americans seem to have no problem with the administration’s inability to understand innovation without their branding, let alone the Vice President’s Michael Scott-like racial observations. (Good thing he’s not George Allen or we’d have to care!)

    * n.b.—I still have a grudge against the HT, who very casually linked a holy figure in my faith to an ideology that has helped kill hundreds of millions world wide. So yeah, f*ck the HT while we’re at it.

    selective memory in tech politics

    WordPress.org recently posted on why the abomination known as SOPA (House)/PIPA (Senate) needs to be stopped. Good arguments all around; the law has virtually no upside and a whole lot of draconian downside. But I found this bit interesting:

    Laws are not like lines of PHP; they are not easily reverted if someone wakes up and realizes there is a better way to do things. We should not be so quick to codify something this far-reaching.

    What, like massive restrictions on the financial industry that make it harder for tech startups to get funding? Or a hastily-written, multi-trillion dollar health care entitlement scheme? No? Never mind, then, carry on myopically.

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