Acne

After a week of family time in Kansas, I was back up in Boston on Thursday for Cycle 1, Day 8 of a clinical trial of a new combination of drugs that will target, I hope, a particular genetic vulnerability in my cancer cells. That's the hope. All that the good people at Dana-Farber can promise is that my participation in the trial will expand the boundaries of scientific knowledge and perhaps help future generations of patients. And the downside? For fans of TV drug commercials, a few of the potential side effects:

Fatigue; Increased risk of infection, which may be serious or life threatening; Bleeding and bruising, which may be serious or life threatening and may require a blood transfusion; Tiredness and shortness of breath, which may require a blood transfusion; Abnormal heart rhythm or irregular heartbeat; Nausea; Vomiting; Diarrhea; Constipation; Joint pains; Fever; Dizziness; Hot flashes; Blurry vision; Hair loss; Headache; Bloody nose; Muscle spasm; Dry mouth; Abdominal discomfort; Indigestion; Flatulence; Pain; Chills; Shortness of breath; Cough; Runny nose; Mouth/throat pain; Back pain; Muscle weakness; Muscle pain; Itchy skin; Night sweats; Taste changes which may affect the way foods normally taste; Decreased sense of touch or sensation; Decreased weight; Difficulty sleeping; Heart palpitations; Jaundice; Acne; Confusion; Bowel perforation that could result in a serious, life-threatening infection and may require surgery.

The only change I've noted so far is acne, way down the list and fortunately above that bowel perforation. I don't know how one realizes that one has a perforated bowel, although I suspect that it's no mystery when it happens and that it's best it not happen far from an ambulance. But if I spend too much time dwelling on the potential side effects, I'd have less time to fret about the real one.

This is not of course my first bout with acne. I had it two years ago in another clinical trial, and before that, decades ago in the trial of 13, 14, 15, 16, 17, 18... It is different this time. The anti-acne drugs are better, and I do not need to worry about getting a prom date; my loving wife will accept my invitation for dinner and say nice things regardless of my complexion. Even so, acne is ugly, uncomfortable, and somehow manages to make me look both juvenile and old at the same time. I do have other disfigurements, most notably an array of scars and a hernia as a souvenir of two abdominal surgeries. But for those, at least. I can wear a shirt. Facial acne is kind of out there.

However, I shall not obsess about any of this. It is too easy to get caught up in worrying about all the things that might go wrong, or the superficial things that certainly will, and forget the big picture, what really matters in life now: the Nationals are 19 games over .500, 6 games up in the National League East, and playing some baseball that at its best looks like last year's Royals. And here let us spare a moment for the beat-up and scuffling Royals, who shined in the All Star Game and still have half a season to overcome the pretenders in the American League Central. It's the middle of the best season of the year, the Dodgers are coming to town, and my bowel is not perforated. Life is just fine.

The crew in Kansas.

Law school

While I'm glad to now be enrolled in the clinical trial in Boston, the periodic travel there and side effects from the new medication will derail, for now, my longtime goal to go to law school. I had been planning to join the incoming class at Georgetown Law School in the fall in a part-time program that I hoped would be compatible with continued medical treatment, but I have now requested deferment of my enrollment to Fall 2017.

I realize this all seems a bit unrealistic. Given my medical reality, it’s fair to ask how I could expect to embark on a four-year academic program that leads, one would hope, to at least a few lawyer years afterward. A clear-eyed evaluation of my odds of doing all that would be grim.

But there's always the chance that things will turn around.  For instance, there's the one-in-a-million case: a cancer patient catches an unusual infection and has an extremely unusual immune response that tackles the cancer as well as the infection. That kind of thing requires an Act of God, when the good Lord looks down on His creation and selects from among His humble servants one who is worthy of such extraordinary grace. Clearly I’ll never make that cut.  But perhaps, as He surveys the state of His creation, He will figure that the humble servant may one day need a good lawyer and bring me along as well.

It is somewhat more likely that one of the great minds behind my clinical trials and cutting-edge treatments will strike on a particular combination of drugs that accomplish the same thing, or that a novel application of existing therapies will keep me going long enough until something else comes along. Or maybe, for whatever reason, I'll just keep going.

So just as it's prudent to get the estate plans in order and make clear my views on what's politely called final arrangements, it's also OK to dream a little. It's now July. I shall spend the next three months watching the Nats and Royals march on to the World Series, and after Game 7 is decided in an extra-inning walk-off, I shall turn my attention to preparatory reading about the law -- lawyers defending the downtrodden, bad lawyers going to jail, good lawyers redeeming the reputation of the profession so that it is once again a respected way to make a living. Well, as noted, it's OK to dream.

Expectations, biopsies and blood draws

Louis Giolito had much to distract him when he walked up to the mound yesterday to begin his major league career.  He was baseball's top prospect, the Nats ace-in-waiting, the focus of press speculation and fan obsession about when he would make the jump to the majors. And then there was June 8, 2010, Stephen Strasburg's major league debut, 14 strikeouts in seven dominant innings against the Pirates. Strasburg raised unreasonable expectations on that day that he has only just begun to meet and set a crazy high bar of success for the next new ace to come along.

Giolito had extra time to think about all that last night, waiting out an hour-long delay for a thunderstorm to pass. But none of it seemed to bother him. He came out throwing heaters, the Mets came up swinging, and while Giolito gave up a single to his first major league batter, most of the rest went quietly. At least from our perch behind third base, he looked like a veteran. Another passing storm ended his debut prematurely in the 4th: no runs, 1 hit, 1 strikeout, 2 walks. That storm also ended our night. Emma and I had a soggy but giddy walk back to the car and watched the rest of the game in a dry family room, a 5-0 win thanks to shutout work by the bullpen and a solid offensive performance against diminished Mets pitchers.  The Mets starter was Matt Harvey, who has been crushed this year by last year's stellar expectations.

I imagine Harvey will get his game back together, just as Strasburg did after a series of setbacks. But I really don't know how they do it. I understand how only a rarefied few are born with the physical gifts necessary to play professional sports. And I understand how only a few of those few have the competitive drive and work ethic necessary to make the most of their talents. But I have always been baffled by how they manage the last piece of it all, the mental strength required to tune out all the distractions, the chatter, the expectations of perfect performance and eternal success. Were I facing all that, I would be devastated by the inevitable failures.

So I manage expectations differently -- I generally expect to fail and am pleasantly surprised when I don't. Otherwise I could never get myself together enough to, for instance, fly up to Boston to enroll in a clinical trial that promises little but required the following on a breezy summer Monday:

• 10:45am Blood draw
• 11:30am CT prep
• 12:30pm CT scan
• 1:30pm EKG
• 2:00pm Consultation and consent with doctor
• 2:30pm Second blood draw
• 3:00pm Skin biopsy
• 4:00pm Retina scans and vision screening

I do not mean to whine; it was not that bad. The nurses were real pros, the doctors were exceedingly nice, the Dana-Farber Cancer Center is top-notch, the CT scan was far easier than that MRI, and the biopsy required only a tiny chunk of flesh and a single stitch that I may just pull out when it gets irritating. It is true that I emerged from the vision screening with watery eyes and blurry vision, barely able to see enough to summon an Uber to the airport, but no matter. I passed the initial screening tests, and I return to start treatment, if all goes well, late next week.

Of course I do not expect all to go well. Further screening tests could delay treatment, and even if I stay on schedule, I will not be surprised if the trial doesn't help much in the end. But there's always hope, and that is I suppose the difference with a professional athlete confident in his abilities (or perhaps just too young to know how quickly things can go south, although Giolito's Tommy John surgery surely demonstrated a little of that.)

Giolito does not have to rely on hope to get through a major league debut. In contrast, hope (and the loving support of family and friends) is pretty much what I've got left. And I actually find that liberating. The nice thing about low expectations is that even small victories are cause for celebration, and there's still always hope for a big win.

Falluja and Tikrit

Baseball is a nice distraction from medical adventures, and when it's time for a distraction from baseball -- for instance, during a five-game losing streak -- the Middle East is a reliable reminder of what actual bad news is.

I've been watching the recent news from Falluja, and actually it's about as good as news from Falluja gets.  The Iraqi army with U.S. air support has re-re-liberated the heart of the city, it's more intact (or at least less of a pile of rubble) than Ramadi after its re-re-liberation. and Iranian-backed militias are taking a lower-profile role than they did during the re-re-liberation of Tikrit. After all those liberations, and that time living under the lunatics of ISIL, and the return of a fragmented government swayed by Iran, the residents of Falluja, Ramadi and Tikrit can be forgiven if they do not celebrate the latest liberation with wild enthusiasm. Good news is all relative.

During my first assignment to Iraq (words that send my daughters looking for something interesting on their phones) I arrived in Tikrit in January 2004 on detail from the State Department to DoD's Coalition Provisional Authority. Security was dicey, but there was reason to believe the situation would get better. We had recently captured Saddam, we were meeting regularly with local sheikhs and politicians to talk about elections and economic development, and we were rebuilding schools, power plants and bridges. We helped organize a town hall meeting where Tikritis had a lively discussion about democracy and human rights -- in the middle of Saddam's hometown.  We traveled throughout Salah ad-Din province, including a memorable outing to Samarra to visit the archaeological sites and join local notables for an al-fresco banquet of grilled fish along the banks of the Tigris.

Dinner in Samarra, when such things were possible.

By May of 2004, the Mahdi Army was on the rampage in Sadr City and points south, U.S. Marines were slogging into Falluja to do battle with the insurgents who killed and mutilated four Blackwater contractors, and Abu Ghraib photos were everywhere on the internet. Samarra was no longer safe for a picnic.

But things in Tikrit weren't all that bad. I remember a particular conversation with a Tikriti politician who noted that Tikritis had mostly chosen to work with the U.S. occupation, or at least stay out of the way, while Falluja residents had supported the insurgency. He pointed to the result -- Falluja was in a constant state of warfare, Tikrit was on the way back to normal. Even then, there was reason to believe things would get better.

He's now dead, killed from what I heard at a roadblock a few years later. Others we worked with are still around and still working to get to normal. And perhaps they will. I read that Tikrit University has reopened, although I also read that ISIL recently blew up power transmission towers near Tikrit, and the long shadow of Iran remains. Sectarian tension continues to rise.

If that is the best we can hope for now for Falluja, and eventually Mosul and other ISIL-controlled areas in Iraq, it is at least better than life under psychopathic slavers. I do not know what lessons to draw from that for life in less catastrophic parts of the world, other than what seems hard, tragic and unfair in one place is just another day elsewhere. And a relative bit of good news is cause for at least a relative bit of hope.

Saddam's hidey hole, during happier(?) times in Iraq.

Kayaking

Kayaking can be a white-water, white-knuckle, exhausting, exhilarating, Type A extreme sport thrill. But if done correctly, it is the ultimate lazy man's endeavor. You sit. You float. You paddle, or not. If the wind or the current begin to carry you to a point far enough from the dock that undue exertion would be required to return, you can nudge the kayak over to shore, look at the birds, pull out a book, or just sit and practice the manly tone of voice you will use when someone asks "What did you do for Father's Day?" and you respond "Went kayaking."

Today we went kayaking for Father's Day. It's a day early, but Sally and Emma are off to New York tomorrow morning, so on actual Father's Day, Meg and I will be recovering from today's exertions, watching the Nats wrap up their series against the Padres, and if we get ambitious, going out to eat. Today's kayaking was really enough sport for the weekend. (Of course I speak for myself -- Meg is already out on a bike ride and will be tearing it up again tomorrow.)

How much sport was it? Really, a little paddling up the Potomac on a sunny morning, light breeze, low humidity, tide receding down river along with a barely perceptible current,  just enough to say "Eh, that's far enough." The girls of course zipped up and down the river, while Sally joined me out of the channel by the shade trees along the shore. But not too close to shore -- if you've recently celebrated your 27th anniversary, and you're hoping for 28, it is advisable when kayaking to rent two singles rather than a double and completely avoid conversations such as:

"Don't go under the trees, snakes will drop in the kayak."

"That's crazy, there are no snakes in the trees and they don't drop in kayaks, and even if they did, they're not poisonous, are they?"

We had separate kayaks and no such conversations (this time), and we look forward to a warm and loving celebration of the 28th.

Emma pulled up while doing a little bird watching and pointed out a lanky, graceful bird skimming the water. I told her it's a heron, took out my phone and, after a quick Google search, read Wendell Berry's "The Peace of Wild Things:"

When despair for the world grows in me 

and I wake in the night at the least sound 

in fear of what my life and my children’s lives may be, 

I go and lie down where the wood drake 

rests in his beauty on the water, and the great heron feeds. 

I come into the peace of wild things 

who do not tax their lives with forethought 

of grief. I come into the presence of still water. 

And I feel above me the day-blind stars 

waiting with their light. For a time 

I rest in the grace of the world, and am free.

It's the poem we read when we scattered Anne's ashes just downriver at the Three Sisters rocks (the point above the Key Bridge in the background of this very blog.) While it did not precisely match the mood of a sunny morning celebration, I'd say it's more contemplative than somber. Contemplating, we drifted back to Fletcher's Cove, and per a request from the back seat, stopped on the way home for ice cream. No better Father's Day.

The frivolous and the deadly

Anyone who writes a blog about watching baseball and fighting cancer has to acknowledge that the juxtaposition of the frivolous and the deadly can be a little odd.  That was evident Sunday at Nats Park, where they lowered the flags to half staff, observed a moment of silence, and noted periodically throughout the TV broadcast that it was a tragic day for America before turning back with enthusiasm to a terrific baseball game.

We didn't make it out to the park on Sunday. I've been lethargic to the point that extracting myself from the couch is a minor project, and I was still having a few shooting pains from the procedure last week when the docs stuck a tube down my throat and cleaned out the bile ducts. (The procedure went well, they tell me; in any event my appetite is better, at least regarding the mint chocolate chip ice cream we make with mint from Sally's garden.)

So we watched the game on TV. Nats go up by 3, Phillies come back to tie it in the 6th, Jonathan Papelbon -- the Nats closer who is either unnerved by his former Philly teammates or just getting old -- comes on in the 9th and gives up a go-ahead home run. Then, bottom of the 9th: Nats get some good at-bats, some hustle by Harper, and Jayson Werth strides to the plate with the bases loaded, two outs, any swing could determine the game. It was, he said later, the moment every kid imagines when playing Wiffle ball in the back yard. Werth -- who is not unnerved by his former team and in fact draws energy from the charming comments of his former fans -- singled up the middle. 5-4 walk-off. Nats mob Werth after he rounds first. He looks fabulously, marvelously, little-boy happy.

Then back to the news from Orlando. It is horrifying, maddening, but I still find myself following it with a bit of distance. That is perhaps a learned habit. During our time in Saudi, I remember coming out of the mall after doing some shopping and checking the car for bombs before strapping the girls into their car seats. (Actually, statistically, traffic is a far greater hazard than terrorism anywhere in the world.)  And a few years later, when we were returning home from Cairo, telling the girls that we would no longer be buying groceries at the commissary so no one would need to sweep the car for explosives before we drove into the Safeway parking lot. My way of staying sane while raising kids in such environments was to take a hard look at the statistics, which show that the actual risk of terrorism is insignificant compared to all the more mundane hazards in the world.

That does not lessen the grief and horror of Orlando. But I do believe that a clear-eyed risk assessment can help make sense of it all. And in matters of the frivolous and the deadly, there may be some value in the psychological disconnect that comes from a fine baseball game on an otherwise grim afternoon.

MRI

Wednesday evening I went in to Georgetown hospital for an MRI, which the liver doc needs to get a good look at my plumbing in advance of a procedure next week to clear out my bile ducts (and no doubt improve the editorial disposition of this very blog). When I made the MRI appointment, I didn't give it much thought -- I've had dozens of CT and PET scans, which are a little tedious but not uncomfortable. And I frequently read about ball players with injuries getting MRIs, particularly guys who play hard and bang into stuff like Bryce Harper, although he does not get the scan every time he gets plunked. In any event I wasn't worried -- what's one more test?

A nurse showed me to the dressing room and the hospital gowns -- oh for my leopard-print State Department robe -- and then stuck an IV into my left arm. He brought me to the MRI room, a vault with a big freaky machine built around a tube that looked just barely large enough to fit an adult of respectable size. I lay on my back on a conveyor in front of the tube. An MRI tech strapped a contraption to my chest designed to guide the scanner, put an emergency call button in my right hand, and put headphones on my ears so I could hear his instructions about when to hold my breath. Also, in theory, I could listen to the radio. (They could not get the Nats game; I settled for NPR.)

None of this was yet awful, even when the tech retreated to safety behind a thick window, closed the vault and fired up the big freaky machine. The conveyor slid me into that tube, which was I suppose big enough to accommodate an adult who was not suddenly seized with thoughts of premature burial. But then the guidance contraption on my chest started to weigh heavy, the headphones squeezed my ears, the machine banged and whirred, and the tech told me to hold my breath, which was not really what I was inclined to do at that point, particularly considering my limited lung capacity. I was more inclined to claw my way out of the tube, tear off all the hospital stuff and dash from the vault in my fetching gown, dripping IV trailing behind me. Freedom has its price.

I decided against that, barely. I closed my eyes and held my breath and started to sweat, counting the rhythmic metallic bangs of the machine, abandoning all interest in the narrative of This American Life playing through my headphones, and remembering urgently that oxygen is actually quite important to one's ability to get up and go home after such torture. I gasped just as the tech said pleasantly that it is now OK to breathe.

OK, it wasn't more than 20 seconds, but we were just getting started. For the next 40 minutes, the machine raged, I held my breath on command, I squirmed and sweated, and when I tried to talk through the intercom to the tech -- a new person after 20 minutes, apparently I had lasted through a shift change -- I got no answer. I fingered the emergency button but did not use it because, I decided, being miserable is not an emergency. And anyway, I imagined the button launching me from the tube like a torpedo.

At last the machine spun down and the tech said I was done. She pointed me back to the dressing room, where I recovered most of my dignity and left behind at least a little anxiety. And when I got home, I played it all up, noting that the trauma of the experience had somehow hindered my ability to do the dishes. Sally and the girls lovingly obliged while I sat on the couch, watched the end of the game and murmured woefully every time they came within hearing about that tube and that thing on my chest.

Yes, I know I should not whine. In fact I am lucky to be in the care of top-notch health care professionals with access to such extraordinary technology, freaky as it is. I shall blame my bad MRI attitude on that backup of bile and look forward to arising next Wednesday with a rosy disposition after they clean out the pipes.