Category Archives: cancer

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

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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.

Memorial for a Mentor

Shortly after I was diagnosed with cancer in 2009, my pastor introduced me to Virginia, another person from church undergoing the same treatment I was. She was diagnosed in May 2009 I believe, so she was roughly six months ahead of where I was. Although I didn’t see her every Sunday, over the past year and a half we were able to share our struggles in the same cancerworld insiderish language. When last I talked to her in February, she told me that all conventional chemotherapy had failed, and now her doctors were trying all sorts of odd drug combinations to stave off the disease. Eventually she had to move to radiation to fight off brain mets. That proved to be too much, and she died March 15th. Obituary here.

Thank you Virginia, for being there.

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.

C.S. Lewis on Christmas

Or the three Christmases, to be more precise. As found on the blog of the late Zac Smith, who died on May 16th of this year from colon cancer… at age 33.

“Three things go by the name of Christmas. One is a religious festival. This is important and obligatory for Christians; but as it can be of no interest to anyone else, I shall naturally say no more about it here. The second (it has complex historical connections with the first, but we needn’t go into them) is a popular holiday, an occasion for merry-making. If it were my business to have a ‘view’ on this, I should say that I much approve of merry-making. But what I approve of much more is everybody minding his own business. I see no reason why I should volunteer views as to how other people should spend their own money in their own leisure among their own friends. It is highly probable that they want my advice on such matters as little as I want theirs. But the third thing called Christmas is unfortunately everyone’s business.

I mean of course the commercial racket. The interchange of presents was a very small ingredient in the older English festivity. Mr. Pickwick took a cod with him to Dingley Dell; the reformed Scrooge ordered a turkey for his clerk; lovers sent love gifts; toys and fruit were given to children. But the idea that not only all friends but even all acquaintances should give one another presents, or at least send one another cards, is quite modern and has been forced upon us by the shopkeepers. Neither of these circumstances is in itself a reason for condemning it. I condemn it on the following grounds.

1. It gives on the whole much more pain than pleasure. You have only to stay over Christmas with a family who seriously try to ‘keep’ it (in its third, or commercial aspect) in order to see that the thing is a nightmare. Long before December 25th everyone is worn out — physically worn out by weeks of daily struggle in overcrowded shops, mentally worn out by the effort to remember all the right recipients and to think out suitable gifts for them. They are in no trim for merry-making; much less (if they should want to) to take part in a religious act. They look far more as if there had been a long illness in the house.

2. Most of it is involuntary. The modern rule is that anyone can force you to give him a present by sending you a quite unprovoked present of his own. It is almost a blackmail. Who has not heard the wail of despair, and indeed of resentment, when, at the last moment, just as everyone hoped that the nuisance was over for one more year, the unwanted gift from Mrs. Busy (whom we hardly remember) flops unwelcomed through the letter-box, and back to the dreadful shops one of us has to go?

3. Things are given as presents which no mortal ever bought for himself—gaudy and useless gadgets, ‘novelties’ because no one was ever fool enough to make their like before. Have we really no better use for materials and for human skill and time than to spend them on all this rubbish?

4. The nuisance. For after all, during the racket we still have all our ordinary and necessary shopping to do, and the racket trebles the labour of it.

We are told that the whole dreary business must go on because it is good for trade. It is in fact merely one annual symptom of that lunatic condition of our country, and indeed of the world, in which everyone lives by persuading everyone else to buy things. I don’t know the way out. But can it really be my duty to buy and receive masses of junk every winter just to help the shopkeepers? If the worst comes to the worst I’d sooner give them money for nothing and write it off as a charity. For nothing? Why, better for nothing than for a nuisance.”

Lewis, C. S. Essay Collection & Other Short Pieces. London: HarperCollins, 2000. (Originally published in Twentieth Century, Volume CLXII, December, 1957.)

Quick Treatment Update

My one year cancerversary has come and gone, so it’s about time I posted a brief treatment update. On November 3rd, I started a Phase I clinical trial at Georgetown involving FOLFIRI (close cousin to the FOLFOX I was on last November-March) and a new trial drug called ABT-888 or Veliparib. ABT-888 is a PARP inhibitor, which basically means it tells cancer cell DNA to go “shields down” during replication, potentially making it more vulnerable to standard chemotherapies. PARP inhibitors have been tested with good results in women’s cancers; this might be the first trial with colon cancer.

The test is scheduled to run until the end of December at least. Longer if it appears to be working. Wish me luck.

A Thousand Times Yes

There’s a lot of truth in this oncology nursing article about young adult cancer survivors. It covers physical, emotion, practical, and even spiritual needs. The only thing it doesn’t address is how even the word survivor has a slippery definition: people use it to cover everything from “beat the disease” to “at least he’s still breathing.” I don’t consider myself a survivor, but I identify with a lot of the stuff in this article anyway.