Category Archives: Journal

Private thoughts

In Memoriam

Dear friends,

It is with profound sadness that I write to you today. Most of you already know, but for those who don’t, David, my brother and writer of this blog, lost his battle with cancer at the end of May. As he feared in his last post, the alternative treatments we tried were too little too late. He died at his home with our parents by his side. I echo his super praise that even in his last days on Earth, he was hardly in any pain.

Even now, five months later, it is hard to articulate the pain our parents and I feel at losing him. It doesn’t make sense to lose someone just two weeks after his thirty-fourth birthday. This is not fair. This is not right. This is not the way it should be.

But we can take comfort in the fact that, even in his too brief time with us, he was able to make a profound impact on those he came in contact with. If you haven’t read it, or just want to read it again, I recommend reading the tribute his work wrote for him. Everyone who read it loved it and it was quoted heavily at the services we had for him. Also check out the one at the website ITA, where he was a frequent contributor for several years. They have links to many posts he wrote which show the humor, grace, and intelligence that characterized not only his writing, but his whole life as well.

The only thing these two tributes don’t capture about my brother is his strong faith. It was a testament to how central it was to David’s life, that combining the viewing, funeral in New Jersey, and memorial service in Virginia, there were five Lutheran ministers who paid their respects. A verse used at both services comes from 1 Thessalonians 4: 13-18:

13Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. 14We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. 15 According to the Lord’s own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. 16 For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. 17 After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. 18 Therefore encourage each other with these words.”

And these are words we can take as encouragement. David believed, as all Christians do, that we will all, at the same time, be drawn to heaven and soar in the clouds. We will be lighter than the birds and much more beautiful than the sun.

Thank you to everyone who provided David with meals, visits, cards, late night NBA Jam sessions, friendship, and support throughout his treatment. I’ll close with the line that ends the American Historical Association’s tribute to him. “[T]here is only one David Darlington, inimitable in his modesty, exemplary in his conduct, and he cannot be replaced.”

Requiscat in pace.

-Stephen

Cancer Diary: Praying for Some Good News

Long time no blog. Unfortunately, there isn’t much good to report.

The clinical trial ended in February. After that, we got to two rounds with the Oxi chemo before the allergic reaction kicked in. So we had to stop that. Then, after a couple rounds of irenitican, my blood platelet count crashed and I spent a week in the hospital. It has been a slow recovery from that, and frankly, I don’t think I’ve been the same since.

My latest CT scan (mid-May) showed the disease is slowly taking over my liver. I had to stop my most recent infusion because my bilirubin–a liver enzyme–levels were high. And that’s where’s our story picks up. I haven’t had a treatment in like 3 weeks, and I don’t know what’s going on at this point. Very scary and depressing to think that after and year and a half of treatments, I might be out of options.

I’ve been praying for approval for a liver surgery because chemo wasn’t doing it’s job anymore. Well, so far that surgery has been denied because of my liver condition, but the docs don’t have any other options for me at this point. Back to the waiting game. The surgery is called SIR SPHERES. It works by injecting radioactive beads right into the liver so it hits the tumors directly. But it’s rough on the liver, so with elevated bilirubin, my doc is afraid it might make me worse.

And my symptoms aren’t helping. Difficulty sleeping. Enlarged liver with tumors on my last scan. Mild edema in my legs. Shortness of breath. Green eyes from jaundice. Big belly from enlarged liver and probably fluid retention. It’s hard not to give up. My parents God bless them are looking at 2nd opinions and holistic approaches. But to me it just feels like too little too late sometimes. We’re going to try to treat the jaundice naturally but it might just be an indicator of where my liver is right now.

Please pray for wisdom for my docs as they come up with other options.

Please pray for me to make it through emotionally and physically.

Please pray for my parents who’ve come down here as semi-permanent caregivers. They have been wonderful and I am more appreciative of them every day.

SUPER PRAISE that I am in little pain right now. Truly a blessing. I could write commercials for Alleve for my next job.

Lutheran College Goes Kosher

My little Lutheran liberal arts college, Muhlenberg College, is now one-third Jewish, according to this Wall Street Journal article. This has forced some reasonable accommodations from the administration, as you would expect. Apparently the school has a great reputation for Jewish community in the northeast, which has fostered the growth particularly in the last five years.

Lord knows when I was there, the official ELCA chapel didn’t do much to preserve or grow a Lutheran identity. They had their groups and activities, but if you wanted serious religious fellowship you had to hang with Hillel or the evangelical Christians as I did.

I also noted Muhlenberg is now up to $47,000 a year tuition, which is ridiculous for a liberal arts degree. My proverbial children are going to Virginia state schools.

Treatment Update: The Next Round

As many of you know, I’ve been participating in a Phase I clinical trial for colon cancer at Georgetown University Hospital since November 2010. After nearly four months, Dr. Marshall and I have decided to leave the trial. The first two months should dramatic progress in reducing the cancer (December 20, 2010) but the most recent CT scan (February 17th) showed basically stability. The tumors are smaller than they were at the beginning, so it’s a net win, but we think we’ve got all we can out of it.

So for now, I’m returning to last summer’s approach of Xeloda+Avastin, plus an IV infusion of Oxaliplatin. Oxi was the heavy hitter I was on when I was first diagnosed and got great results out of it. We’re expecting further tumor reduction from the return to Oxi. Unfortunately Oxi can only be taken for limited amounts of time due to cumulative side effects (potential nerve damage in the hands and feet). Usually 8-12 doses are the max at any one time.

I’m hoping that the new treatment plan can continue to push the tumors back for a couple months until another clinical trial opens up at Georgetown. We just need to keep searching for the silver bullet.

Prayers appreciated.

Present at the Creation

Last night I took in my first ballgame of the year at Nats park, which just so happened to be the legendary debut party for 2009’s #1 draft pick Stephen Strasburg. There were rumors last month already that Strasburg would make his major league debut against the Bucs. I’d planned to make one of the series anyway, so everything worked out great.

I was at last night’s game up in Section 307, surprisingly next to a group of Bucs fans. Usually there’s a good Buccos contingent at Nats games, but with the Strasburg debut the city came out. Most buzz I’ve ever seen for baseball game.

The first inning was a 1-2-3 inning: lineout to short for Andrew McCutchen, ground out by Neil Walker, and strikeout for Lastings Milledge. Milledge got the biggest boos of the night. I can’t blame Nats fans for that. The former Nat and our current starting LFer is hitting in the .240s with zero home runs. The Pirates are only the third team Milledge has fooled with his “potential.”

Strasburg fell behind a couple guys in the first two innings (several 2-0 counts) but didn’t allow a walk. Ryan Zimmerman gave him a 1-0 lead with a solo shot in the bottom of the first. Strasburg’s fastball was a consistent 97-99MPH and hit 100 twice by my count, both in the second. The first was followed by a 83MPH curve for a K (not fair) and the second Andy Laroche slapped to right for the Bucs’ first hit of the game.

Delwyn Young’s home run in the 4th, which gave the Pirates a brief 2-1 lead, shocked everybody. The ball was thrown back (PLEASE don’t do that unless you’re at Wrigley). The Bucs didn’t threaten before and didn’t threaten after. In fact, Strasburg seemed to be getting better as the game went on.

Strasburg’s final line: 7 innings pitched, 4 hits, 2 runs, 0 walks, and a Nationals’ record 14 Ks.

Second biggest cheers of the night: video of Bryce Harper being drafted. Nationals fans know their future looks bright.

Lost in the shuffle, Pirates pitcher Jeff Karstens was pitching an effective game until back-to-back HRs by Adam Dunn and Josh Willingham in the 6th gave the Nationals a 4-2 lead. Karstens’ pitch count was actually much lower than Strasburg’s for much of the night and he was just as effective. Journeyman control pitchers who throw in the high 80s aren’t nearly as sexy as strikeout phenoms who can hit triple digits, but then can certainly keep their pitch counts down.

Tonight, the Bucs take their turn at introducing the future. Their starting pitcher is Brad Lincoln, former #1 pick from 2006 who has made it all the way back from Tommy John surgery. Most project him to be a solid #2 or #3 starter in the majors, which the Bucs have a lot of (see also Duke, Zach and Maholm, Paul), but an upgrade over some of the other guys the Bucs have trotted out this year. Starting at LF is Jose Tabata, who came over in a trade with the Yankees a couple years ago. Once heralded as the Yankee’s best prospect (comparisons to Manny Ramirez) his power hasn’t developed like the Bucs wanted, but otherwise he’s ready to contribute on offense and defense (it’s not hard to be an upgrade over Lastings Milledge). He’ll end up as a nice complement to Andrew McCutchen and the real power prospect, 3B Pedro Alvarez, due to make Pittsburgh later this summer.