The $800 Puke

250 mg Temodar
A 250 mg Temodar capsule costs about $800

I started my new Temodar prescription last night: 250 mg per day for five days. The dose was doubled from the six-week radiation period.

I wasn’t worried about side effects, after tolerating the lower dose without a hint of nausea. At 2 a.m. I woke with the warning signs of impending sickness: a stiff, heavy tongue, rich drool and a passionate desire to see my reflection in the toilet bowl.

My first reaction was to worry how much of the approximately $800 in Temodar I’d be able to keep down. ([10. Based on a calculated price of $3.35/mg, which seems fairly stable across dosages.]) I heaved sparse drooly drips and felt better. There was no food or anything of substance in the bubbly emesis. I wondered: could I drink that? No, I don’t think so. Flush.

I regretted not taking a Zofran pill first. I had casually dismissed the anti-nausea med after only the first week of chemo, back in June. I went back to bed, but sleep escaped me. I was still queasy. I took a Zofran.

A few minutes (maybe an hour) later I was back in the bathroom vomiting, with extra volume but still no color save a constellation of orange flecks.

In the grand scheme of things, might a small deficit of Temodar affect my chances of survival? Perhaps there is a plausible explanation? I felt ill yesterday after swimming near the sewage treatment plant. I still don’t feel quite right.

OK to leave?
OK to live? Oh, OK to leave the Temodar.

NOTES:

Black

In the world of brain tumors, “progression” and “enhancement” are bad. On an MRI, bright (enhanced) brain tissue is a sign of disease progression. My oncologist pulled up an image from last week’s MRI during our meeting today, and the tumor cavity was, fortunately, black.

My wife began to cry. Is it strange that I felt no anticipation for this moment of reckoning? Have I grown to accept that there is little I can do to alter the course of this disease? Or, did I know, somehow, that the tumor had not progressed? Some of each, I suspect.

The radiology report of the Aug. 10 MRI notes “no measurable enhancement along the margins of the resection cavity… There are no new regions of abnormal enhancement to suggest additional neoplastic foci”. ([10. Neoplastic: pertaining to new tissue, e.g. a tumor.])

When my oncologist mentioned a new Temodar prescription, I realized it had been nearly a month since I finished the six-week regimen that accompanied radiation treatments. Was he waiting to see whether the state of my disease warranted further chemotherapy?

More Chemo :-)
My wife shares the good news by text message. Encouraging MRI results have earned me another round of chemotherapy, it appears.

NOTES:

Life’s Work

Life's work: projections of personal achievement over time
Life's work: projections of personal achievement over time


Hi, my name is Bogart Salzberg and I’m writing to endear myself to your sense of the potential for human redemption. I’ve been the sole proprietor of InkFist.Com since 2001, treading many long and lonely paths through the gears of the Zend Engine and the dungeons of Debian. Recently (as in yesterday), I’ve come to the conclusion that I can’t do it alone. After nine years of conquest this console warrior’s got too little gold to show for it.

So I’m coming out of the wilderness (a.k.a my home office) and peddling my services to more senior knights of the net. I believe you’ll find that in addition to my stalwart commitment to this D & D analogy I have an admirable range of skills and personal attributes. (Dexterity: high; Comeliness: not so much)

That is how I introduced myself to the software developers at Portland Webworks. Approaching my 35th birthday, I forced myself to admit that I had failed in business. With my wife earning a good income, I’d been insulated from the weakness of my gains for too long. Time slipped and dripped into what I generously called “an investment in myself.” For what yield?

It’s true that I had taught myself enough about software development to step confidently into a job for which few are qualified. I wish I’d learned earlier to put my nose to the ground and follow the other dogs. I’m an autodidact, but not a self-starter.

I got the job. My earnings soared. The benefits were great. I began to think about retirement, about “growing my money” and accelerating my leverage in the game of life.

Then, in the early spring, I withered. The thought occurred to me, on the day of my diagnosis, “I’m retired, finally.” I had mixed feelings about it. Forty hours is a few too many, I always thought. But the arc of my career, of my life’s work, turned down and fell. The land of the things I will never do comes rushing up to meet me.


I grew up thinking I could do everything. There was no reason to think otherwise. The future seemed limitless. That my potential was, too, seemed to be the subtext of all those “programs for the gifted student” I attended in summers.

Around the time I graduated from high school, I dismissed the notion of achieving the best of everything. With a limp G.P.A. and distaste for conventional notions of success, I certainly disqualified myself from the best universities.

Still, I expected I could achieve anything and determined I would make my own parade. An education in the liberal arts at an unorthodox small college gave me a taste of that pursuit (plus a lovely bride), but couldn’t force me to grow up.

After college, having borrowed quite enough money and spent quite enough time rehearsing adulthood, I took a job as a reporter at a tiny weekly newspaper in northern Maine. I wrote, I smoked, I cooked, I hiked, I was awed. I was on my own and making my way.

Yet I failed to answer the crucial questions: what do I want and how am I going to get it? Shopping the “who you know” seemed a clubby and cloying enterprise, and selfish ambition a sin. I always imagined I could accomplish greatness. I just lacked the will to prove it.

So I continued, treading a path in the fog, somehow expecting the measure of my skills to cast its own influence ever forward. I worked at two other newspapers over the next few years, then succumbed to a soul-quenching boredom.

I was charmed by the idea of “self-sufficiency” and fantasies of building my own house, so I joined a carpentry crew. Having very little experience, I found myself installing fiberglass insulation most of the time. My self-esteem dipped, but gradually I gained the carpentry skills and practical confidence I sought.

Having a natural interest in publishing, I played at making web sites. The work was perfect for a reclusive tinkerer such as myself: effective in small doses, cheap to produce, and free of the staid crusts of authority. I continued to learn and grow as a software developer, but still avoided growing up.


When I was about 25 years old, I began to accept that some things worth doing I myself would never do. How casually I had saved even the slightest intentions for the endless queue of future deeds!

It was, in some ways, a liberating experience. I forgave my abandonment of many idle projects. But I questioned the wisdom of my path, from which other choices seemed to disappear.

My lifelong desire to create the most beautiful thing, the most human expression, the resolution of yearning, the distillation of grace — gave way to a cynical tug of practical matters. I would settle for something beautiful.

At 30, marriage and fatherhood devoured my time and will. I settled down. My nexus of available futures fell apart. If I wanted to be successful, I was going to have to do it the old-fashioned way: with money.

I discovered an allure, an artfulness, in writing software. I might have mastered it, given time. But I was writing other peoples’ stories. I felt no compulsion to achieve. In the end (the end of my other life), I settled for something pleasant.

Perhaps now, in my new life, I can settle for these very words.

V.O.B.

Chemo vs. The Beach: A Cost-Effectiveness Analysis

Recent analyses have suggested that chemotherapy is very expensive. In order to determine whether the cost of chemotherapy is justified by the weak taper of idle moments it so tediously provides, I performed a cost-effectiveness analysis comparing it to a day at the beach. Costs, quality-adjusted life days (QALD) and the value of Bogart (VOB) for each strategy were estimated from the literature. ([10. Much of the dry, scientific language in this perversely sarcastic post is lifted verbatim from a genuine “cost-effectiveness analysis” in a scholarly publication. See footnote 2 for attribution of such heart-warming concepts as “quality-adjusted life days”, “decision tree” and “threshold willingness to pay”.]) ([20. Gerard P. Slobogean, Peter J. O’Brien, and Carmen A. Brauer. Single-dose versus multiple-dose antibiotic prophylaxis for the surgical treatment of closed fractures: A cost-effectiveness analysis. Acta Orthop, April 2010, 256–262.])

Just going to the beach and blowing off treatment results in a benefit to insurers, employers, families, communities and starry-eyed children of about $300,000. ([30. I found this $300,000 figure in Update on Tyler’s Brother, Brent, from Luxe Chandelier, the blog of Steph Anne. I present it here as a shout-out to Brent, whose life story is similar to mine in some important ways. Please read more about Brent and consider contributing to the care and support of Brent and his family.]) In fact, that is how much it will cost to raise a child born today, according to the USDA. ([40. Release No. 0241.11, United States Department of Agriculture, June 9, 2011.]) Chemotherapy added some unknown number of QALD (of questionable use) and an awkward family-sized serving of VOB.

A decision tree reflecting the choice of treatment and possible outcomes was created. The decision tree reflects the interaction of the following outcomes:

  • Death (soon)
  • Death (sooner)

Chemotherapy treatment is based on temozolomide oral (5 doses of 240 mg on consecutive days followed by 23 days without treatment) and bevacizumab intravenous (610 mg per 14 days). Beach treatment is based on 45 minutes of earnest puttering one to three times per week with ice cream follow-up.

A threshold willingness to pay (WTP) of $137 per incremental QALD gained was used to choose a preferred strategy. My analysis suggests that if I survive six or more years, launder my share of skivvies, elude vagrancy and die poignantly, it will all be worth it.


NOTES:

Gary Carter

I have no love for the 1986 Mets. But now that Hall-of-Fame catcher Gary Carter has been diagnosed with malignant brain cancer, the memory of his team’s dream-crushing victory has an added dimension.

Carter, 57, was diagnosed about two weeks after me. I remember seeing the news of his inoperable tumors in the ESPN crawl. While everyone else was thinking “oh, that poor fuck”, I thought “now he’s on my team”. There’s nothing like a terminal cancer diagnosis to transform a villain into a victim. How bizarre that I can almost adopt the joy of ’86, as I imagine us remembering it together. There is no cure for cancer, but cancer itself may treat the most stubborn of our invented maladies.


UPDATE (Feb. 16, 2012): Gary Carter died today. I saw it in the crawl on the NBC Sports Network while I was looking for the Celtics game.

MLB.com quoted baseball commissioner Bud Selig stating “‘The Kid’ was an 11-time All-Star and a durable, consistent slugger for the Montreal Expos and the New York Mets, and he ranks among the most beloved players in the history of both of those franchises. Like all baseball fans, I will always remember his leadership for the ’86 Mets and his pivotal role in one of the greatest World Series ever played.”

How many ages have scoured the Earth since we hung our heads in shame and sorrow? ’86 is history. The Sox won it all again (twice), Bill Buckner returned to a standing ovation at Fenway Park, and now the conqueror has laid down his bat. Steal home, kid. Steal home.


Gary Carter
1954 – 2012
May He Rest In Peace