Game reset

I unexpectedly spent yesterday afternoon in the hospital after a little pink skin and itchy feeling on my chest turned nasty and painful and red. My port, loyal friend through more chemotherapy infusions and blood draws than I care to remember, had become infected and needed to go. I didn't talk with the medical folks much about what went wrong -- they seemed to think that 18 months was about the lifespan of the kind of port I had -- but it may have been that I was remiss about having the port accessed and flushed. So, fellow port-wearers (port-isheads?), take care of your port and watch out for soreness and redness.

*

Otherwise, things are still mostly OK. I finish my third cycle of Temodar on Monday; we'll then take a week off, do a scan, and hopefully launch a fourth cycle of the drug. If a scan after the fourth cycle looks good, I'll decide whether to continue the Temodar or, more likely, try the deforolimus trial. If the scan is bad, we'll choose some other form of chemotherapy -- if that comes to pass, I'll probably want to shop around for a clinical trial, though I don't have anything specific clearly in mind.

The Temodar is clearly fatiguing me, but in subtle ways. Unlike all the other chemotherapy I have had, it's hard to point to specific things and blame them on the drug. This is a good thing, obviously, but it leads me to sometimes not give myself the slack that being on chemo requires. I get frustrated at myself for not accomplishing more, when really I need rest to accomplish the most important goal -- getting through the treatment and getting better.

And no stepping on your brother's doughnut!

L. and I are going to start bringing it: The Obama house rules are coming to the Sick Guy residence...

1 - “No whining, arguing or annoying teasing,” says wife Michelle Obama.

2 - Make the bed. “Doesn’t have to look good-just throw the sheet over it,” she says.

3 - Set your own alarm clock. “They get themselves up, get their own clothes,” says Sasha and Malia’s grandmother Marian Robinson. “They’re very easy to take care of; there’s not much left for me to do!”

4 - Keep playroom toy closet clean.

5 - Allowance from dad for doing chores: $1 per week.

6 - No birthday or Christmas presents from mom and dad, who spend “hundreds” on birthday slumber parties and, as Barack puts it, “want to teach some limits.” Says Michelle: “Malia says, ‘I know there is a Santa because there’s no way you’d buy me all that stuff.’”

7 - Lights out at 8:30. “They got an extra half hour when they were ready to read on their own,” says Michelle.

Of course, things like this always sound good. As little T. approvingly told me the other day, quoting a friend of ours, "You'll get what you get, and you won't get upset." The context for saying this? Shortly after getting really upset over something she didn't get.

The lawn dart effect

While the floating car is yet to be invented, a "practical" (sort of) jetpack is finally here. Though it has thus far flown only six feet in the air and sounds like a hypertrophied lawn blower, the inventor, who has devoted 27 years to the project, is planning a 500-foot trip within six months. 

The weight of the engines and body of the flier sits lower than the rotors to create a pendulum effect that discourages the contraption from tipping upside down and creating what might be called the lawn dart effect.

“People come up and go, ‘Is it safe?’ ” Mr. Martin said. “Safety is a relative thing. We think we have done a lot to make this by far the safest jetpack ever built.” But, he acknowledged, “It’s not a high bar.”

He added, “I’ve got to get my head around the fact that at some point, somebody is going to have a very bad experience.”

Onward progress marches... Could the Make-a-Wish foundation hook me up?

Assembling opinions

Teddy Kennedy was diagnosed in May with a bad brain tumor (a glioma) that initially appeared unresectable. Then, to the surprise of many doctors, he left Boston and Mass General and underwent a three-and-a-half hour surgery at Duke. Kennedy made his decision after convening a group of the nation's leading surgeons and oncologists to hash out his options, a process that the New York Times describes in an interesting article today:

The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

Except for the circumstances, telephone participation and the number of invited experts, the meeting resembled the tumor board meetings that specialists regularly hold in their hospitals.

This was pretty much my fantasy of how I might devise a treatment plan. Needless to say, it didn't work out that way. One of my few regrets to date about how we went after this disease was that we only talked to one outside surgeon, who was fairly conservative. Although his credentials were sterling, we should have talked with another expert at another center. 

While you're not going to assemble your own all-star tumor board, acquiring a second or third opinion, the story says, isn't out of reach of non-Kennedys, and may not necessarily require an expensive trip to another state: 

Several doctors not connected with Mr. Kennedy’s case said in interviews that they admired his resourcefulness in getting more opinions simultaneously. At the same time, these doctors said many average patients gained competent advice, without a command performance, by sending pertinent records to experts for their opinions.

Many patients search the Internet for medical information and ask that their scans and other data be sent electronically or by overnight services.

Then such patients visit, call or write the consultant.

The last picture show

I mentioned Randy Pausch -- a Carnegie-Mellon computer scientist who died of pancreatic cancer on Sunday -- below. His "last lecture" (a frame used by many universities for faculty lectures; the idea is for the professor to sum up the lessons of their life and work as if he or she were speaking for the last time) is a funny and poignant take on achieving childhood dreams that is well worth watching. A NYT blogger offers much more on Pausch here and here. 

So many, so many

Former White House press secretary Tony Snow's recent death from a recurrence of colon cancer saddened me. Although he passionately defended an administration I believe is indefensible, I couldn't help admiring the intelligence and brio he brought to his work. I also admired the fact that he took on the White House job, the most difficult of his career, after his first bout with colon cancer. Despite having to use a colostomy bag and the hovering threat of recurrence, he dove into an almost impossible job with verve and confidence. He also had wise things to say about illness, to wit:

The art of being sick is not the art of getting well. Some cancer patients recover; some don't. But the ordeal of facing your mortality and feeling your frailty sharpens your perspective about life.You appreciate little things more ferociously. You grasp the mystical power of love. You feel the gravitational pull of faith. And you realize you have received a unique gift -- a field of vision others don't have about the power of hope and the limits of fear; a firm set of convictions about what really matters and what does not. You also feel obliged to share these insights -- the most important of which is this: There are things worse than illness -- for instance, soullessness.

Thank you PB for passing this on to me. Let's be ferocious in our appreciation; measured in our fears; wise about what really matters.

*

Postscript: I'm ruining my momentum here, but I can't help grumbling over the lede of the otherwise excellent Post obit linked above: "...died yesterday at Georgetown University Hospital after losing a high-profile battle with cancer" (emphasis mine). 

Besides being a lazy cliche, this phrase strikes me as factually wrong: you don't "lose" your battle with cancer -- or "win" it. Not physically, anyway. You persevere as best you can, you find the best available medical treatments, but in the end, the disease runs its course toward death or life. You may as well battle the Pacific surf. We are frail in the face of this momentum, whether the movement is random, as I tend to believe, or part of an inscrutable design. The fight, then, is not against death, but for life. How can we choose to live well for whatever time we have left? 

That battle, of course, isn't reserved for the ill; we are all facing it, whether consciously or not. As a collaborator said about computer scientist Randy Pausch, who just died of pancreatic cancer but inadvertently became famous for the brave and philosophical way he lived with the disease: "His fate is ours, sped up."

I talk a little more about the problems with cancer metaphors here. 

Blogging against cancer

At 18, Chase Crawford-Quickel had already faced cancer twice: rhabdomyosarcoma first, and then, three years later, a terrible form of leukemia. After a bone marrow transplant last year, the disease recurred this year, and Crawford-Quickel is currently recovering from a stem-cell transplant. Through it all, his mother has been blogging. A recent Los Angeles Times article sketches the family and their different ways of coping in the face of calamity.

'Not today!'

Saturday morning, little B. and T. in the bed, and the conversation turns to my illness. 

"Daddy is sick."

"No he isn't!"

"Daddy has cancer."

"Not today!"

I love that. Some of it was the mix of defiance and resigned hopefulness in her sweet four-year-old voice, which I can't capture here. But I also loved the idea of taking a break from cancer -- not forever, as beautiful as that would be, but just for a day. And indeed, after a disastrous trip to the farmer's market (think humidity, accidental/on-purpose doughnut stepping, squabbling in every possible family dyad and tearful disagreement over raspberry lemonade) we decided to double-down with another outing and went to the beach. It was great. For a few hours I pretty much forgot about being sick.

My alternative remedy

I'm not a big alternative medicine guy. I don't, for example, believe that there's some magic diet that will stop my tumors in their tracks, and I'm doubtful that big pharma has left a $100-billion compound or derivative on the table because it happens to be found naturally in a mushroom or spice. I'm not trying to criticize folks who feel differently -- it strikes me that taking charge of one's diet or making one's own decisions about supplements recovers some of the power and agency that this disease takes away, and for all I know it just might fight the illness as well -- I'm just talking about my personal inclinations.

But even I have been trying to adopt an alternative remedy recently: sunlight.

A growing body of research suggests that low levels of vitamin D (which is hard or impossible to get in sufficient quantities through diet, easy to get through the sun) are correlated with incidence of a variety of nasty health complaints, including a potpourri of cancers. More stunning to me, some research suggests that the vitamin slows the progression of breast and prostate cancer, as well as melanoma (which has some similarities to soft-tissue sarcoma).

I'm making a concerted effort to get "sensible" amounts of sun (a few minutes on the arms and legs, not baby-oil-soaked, skin-destroying tanning sessions) this summer, and I may talk to my doctor about supplementing (or even hitting a tanning booth!) during the November to February period when sun is scarce in these cold latitudes.
*
I know I'm short on meat here, but this post from the Wall Street Journal's health blog is an excellent place to begin reading more about this topic. This Canadian Broadcasting Company article makes a startling case for D. Here's the recent AP story on D and breast cancer.

Whether or not it fights cancer, preserves life and prevents disease, sunlight at least feels good... unlike, say, a chai colonic or a dinner of sea kelp.

Another paper

If there's something revolutionary in it I'm missing it, but here's a recent ES paper from India. If I can access the full-text, I'll scan the tables and update if there's something interesting.

Original site is here:

Clinicopathological features with outcomes of a series of conventional and proximal-type epithelioid sarcomas, diagnosed over a period of 10 years at a tertiary cancer hospital in India

Epithelioid sarcoma (ES) is an uncommon sarcoma. Lately, its variants, including proximal-type ES, have been recognized. The present study highlights clinicopathological features of 26 (65%) conventional and 14 (35%) cases of proximal-type ES. Thirty-eight percent of cases were seen in 21–30-year age group, including 77.5% cases in men. Extremities were the commonest sites in both the subtypes. Histologically, conventional-type ES displayed nodular tumor aggregates with necrosis, while proximal-type showed solid arrangement of large, “rhabdoid-like” cells. More cases (64.2%) of the proximal type were of grade 3. A range of differential diagnoses was considered. Most important immunohistochemical markers were vimentin, epithelial membrane antigen, cytokeratin, CD34, and desmin. Maximum (72.5%) cases were treated surgically. Recurrences and metastasis were observed more in the proximal type. The 7-year disease-free survival was 19.4% in the conventional and nil in the proximal subtype (p = 0.06). The overall survival rate was also lower in the proximal (31.3%) than conventional type (90.2%; p < 0.001). Other unfavorable parameters were deeper location, larger size, and higher tumor stage. This unusual sarcoma, with characteristic growth patterns, merits a proper histological evaluation, as it has many mimics. Proximal-type ES is rather a morphological subtype, associated with an aggressive course.

And for something completely different...

The transition is rough -- but isn't that what blogs are about? -- but I've been wanting to talk about some delicious things I ate in California.

The most arresting thing I ate was a stir-fry with a cake of wide noodles that were browned on the bottom and soft inside. I was already slightly discomfited by this when my dining companion, poking around with her chopsticks, unearthed a flat strip of maroon meat and exclaimed, in charmingly accented English, "Oh! Heart of the pig!" I'm no Tony Bourdain, but I tried some. It was livery and I didn't like it.

Some things I did like:

Shrimp and mango salad in Little Saigon. Cilantro, lime, thin strips of mango, fat shrimp with charred outsides and soft centers... yeah.

The lemon-ginger drink at Alegria in Echo Park. Though beloved by at least a half-dozen of my friends, I'm not the biggest fan of this place, even though they have a special "veggie" burrito on the menu that features carnitas, a combination that amuses me greatly. The food is generally good, but it doesn't excite me. This drink, however, is a different matter: It contains an insane amount of grated fresh ginger, which both moderates and is moderated by a fairly sweet lemonade. Incredibly refreshing. Bonus points: They serve it over crushed ice instead of cubes.

Mexican shrimp cocktail at Serenata de Garabaldi in East LA. Lime, cilantro, tomato juice, fat shrimp... I had forgotten how much I enjoyed this combination. The shrimp were a little overdone, and my platonic ideal of this dish includes lots of ripe avocado, but it was delicious nonetheless and inspires me to take a crack at it. EC, are you game?

Double-doubles with grilled onions and "well-done" fries. Everyone knows that In-and-Out makes a great fast-food burger, the scoop here is requesting that their normally poor fries (which give "frozen" a good name) cooked well-done. This improves their flavor and texture enormously. Asking for grilled onions is also smart.

Fish tacos from Taco Nazo in Norwalk (Sadly, this particular outpost of the family-run chain now bears the cheesy tag "Senor Baja," which I refuse to call it because their tacos are far too good for that name.) The total was eight. Short of the 50 I had hoped for, but not bad. They were all delicious.

Papaya and dried-shrimp salad from Renu Nakorn in Norwalk. The tiny, saline dried shrimp make this.

The roasted olives from Pizzeria Mozza in Los Angeles. I could have picked any number of things -- the sea-salted butterscotch budino, the egg/guancale/radicchio pizza, even the thick wedges of bread toasted in the wood oven and drenched with new olive oil -- but the olives are probably what I'm most likely to try to duplicate at home. They emerge from the oven sizzling and surrounded by roasted garlic, herbs and fat peels of lemon. The lemon insinuates itself deliciously into the fat green olives, at once changing and highlighting their natural perfume and saltiness.

Burratta, roasted peppers and aged balsamic at Fraiche in Culver City. I was generally underwhelmed with the trendy Fraiche, but the billowy heaps of burratta -- a cousin to mozzarella with a soft, creamy-curdy center -- worked wonderfully with the peppers and vinegar.

Smoked tri-tip from Lucille's BBQ. This, maybe, was the most shockingly good thing I ate on the trip, mainly because my expectations weren't all that high and I was filching it off my mother's plate. Lucille's, a local chain, is good but not exceptional. This tri-tip, however, was exceptionally good: As meltingly tender as great brisket, a whallop of smoke, an interesting dry rub. No sauce required or welcome. I bought a tiny tri-tip from a nearby beef farm in the hopes of smoking it into something resembling this.

Gray

I tend to post here exuberantly -- either because I'm happy, or because the latest cascade of disaster has tipped my mood beyond sadness to a kind of bemused, anticipatory giddiness.

This is probably a big mistake. For all the (very real) desire I feel to eat every sandwich, to notice and celebrate the present, to choose relative strength over relative weakness, to stay engaged with other people's troubles instead of letting a balloon of my own sorrow billow around me, I don't want to come off as the heroic cancer patient; the sort of guy of whom, in his obituary, it is said that he "never complained" and "always had a smile on his face." Reality is more complicated than that; sadder.

Let the record show that I complain. I cry. I act like an asshole. (Have I quoted that Onion joke here yet? A fake obituary reading, "Matt Smith, 36, died Tuesday after a long and cowardly struggle with cancer.") Sometimes, maybe even often, I just feel numb, gray. That's what I've been for the last week or so. Whether it's fatigue, my ongoing treatment, assorted cancer-related aches and paints, the end of our California trip, I don't know. I've been down a lot.

I know that Joshua's recent post on Russell Sawicki's death from epithelioid sarcoma saddened me deeply. I didn't know him, but learning even a little about him revealed a young man with an enviable gift for friendship. His battle may be over, but clearly it was not lost. (Update: Russell's obituary is here.)