Home sweet home

Mocking as always my notions of how family time should go, the kids greeted us oddly late Saturday afternoon when we staggered in from the drive back from New York.

They had just started watching a television show, so after a couple of sweet hugs, they were ready to return to the TV. I was ready to pour out my heart to them and grab on forever without letting them go. Since that would be weird, we let go, made our way to another room, and waited for the show to end before we began our reunion. I'm still tired and worse for wear after the various procedures, but I have gotten in some play time with both of them (re)reading the genius Diary of a Wimpy Kid with B., and tickling and singing to T., which is perhaps her favorite combination save peanut butter and jelly. Bizarrely, I've also felt compelled to add some "chest tube" jokes to our tickling -- I make a loud drilling sound, attack her ribs, and much hilarity ensues. She isn't fooled, however. "They don't use a drill, Daddy! They use medical stuff!

*

My discharge instructions from the hospital amounted to basically nothing, so I have to figure out when I can peel off the masses of dressings around my wound and actually take a real shower. But despite carrying a whiff of the bus station about me, I'm in pretty good shape. The chest is sore, but healing rapidly. My strength is lousy, but being up and around a little bit seems to be building it back. I walked up three stairs -- not flights, three stairs -- at the hospital and my quadriceps felt blown to tatters, but maneuvering around the stairs here at home is rapidly getting easier. My dad, who has been here taking care of the kids, has just a little time left here, so I'm trying to enjoy that without getting sad about his impending absence.

Broyard blogging

I've been wanting to reread Anatole Broyard's Intoxicated By My Illness since I got diagnosed, but I haven't gotten around to it yet. But I feel like the critic and essayist -- who died of prostate cancer in 1990 -- has been floating around me recently. His daughter came up here to read from her memoir (Broyard scrapped his racial identity to "pass" for white when he moved to New York from New Orleans). Dana Jennings, who is writing about his prostate cancer for the Times, quoted some of Broyard's odd and intriguing thoughts in a recent column:

“It seems to me that every seriously ill person needs to develop a style for his illness," he quotes Broyard as writing, adding on another thought from Broyard later in the narrative: “Only by insisting on your style can you keep from falling out of love with yourself as the illness attempts to diminish or disfigure you.”

I found this, from Bliss Broyard's memoir One Drop, shocking. I'll put it out there in the hopes that it will trigger more thoughts soon.

Quick set-up: Anatole Broyard, Bliss Broyard's father, is terminally in and in the midst of a crisis. Her mother sends him to him:

His gaze was focused on an invisible spot before him. I thought perhaps that he was staring down a tunnel to the end of his life and that I should try to ease his mind by reassuring him that he'd arrived there valiantly. I pulled a chair to the head of his bed and leaned in close and whispered to my father that I loved him, that he'd been a great dad, that because of him, I'd never be able to lead an ordinary life. These words were true, but saying them made me feel uncomfortable, following as I was some borrowed notion of how to act at a loved one's deathbed. ... His eyes glanced in my direction, which encouraged me to continue. I told him that I was proud of him, of all that he'd accomplished, and that he'd had a successful life. He looked at me again and spoke in a hoarse whisper: "Blissy, enough with your bromides. I'm trying to concentrate. You have no idea how difficult this is."

The rigor and cruelty of that haunts me.

Oh yeah, the point!

Finished with the doctor.

It's so easy to get wrapped up in this and that tip of the lung or pain the pelvis and forget that there's at least theoretically a point to all these logistics and trips to New York: Getting a drug that will help me. In part because we just had a CT scan two weeks ago, in part because I'm feeling tired, I hadn't focused on the results of today's scan.

They were pretty good!

My disease is stable, and my nastiest tumor actually shrank a fair bit. Another significant one didn't show any change. I'm not sure if big nasty's decline crossed the 20 percent threshold or not -- no formal report yet -- but it's been a long time for me since anything shrunk even modestly.

And, obviously, my lungs look a lot better. How'd that happen?

Ironically, though, today's "stable" (but improving slightly) disease, unlike six weeks ago's "stable" (but progressing slightly) disease, earns me a one-way trip into randomization. We will receive either the drug or placebo today, and I will resume taking some kind of medicine tonight.

The protocol I have praised highly here in the past is now biting me in the ass.

Out! (Sorta.)

My longest hospital stay ever is over; but the Sloan-Kettering medical madness, it goes on.

I was admitted immediately after my last regularly scheduled Brivanib checkup two weeks ago, with the next one scheduled for April 2. As I think I mentioned here earlier, we pushed that appointment and CT scan to today to avoid a yo-yo trip back and forth. So here I am in the familiar posture of waiting for Dr. BT. We had planned to at least start the drive back this afternoon, but we're both already exhausted and we may well not be done here until 6 p.m., so it's another night in New York City.

This one, however, will be a little bit more luxurious, offering the Kiehl's toiletries and Frette linens that Memorial Hospital, so far, lacks.

We're aching to see the kids, and they no doubt are primed to jump all over us, but I think it's going to work out a little better this way. Besides, after sleeping on a "sleeping chair" for nearly two weeks, a device that was too short, too cold, too hard and too vinyl, L. deserves a king-sized bed. I do, too.

The repellent Gus

L. and I have been struck by how… nontherapeutic some so-called therapy dogs are.

Take Gus, for example. He has flaxen hair. He wears clothes. He is groomed weekly, if not hourly. He has a human being who outweighs him by a factor of 30 completely at his service, challenging the theory of evolution. From her volunteer work to her leisure time, this woman is completely devoted to this animal. He’s like the brazen calf, only much smaller.

I’ve come across Gus a few times at our hospital near our home. A typical interaction goes something like this, “Would you like a therapy dog visit with Gus?”

“Sure," I say, thinking, “No, I would not like a therapy dog visit with the repellent Gus."

At this, the lady turns from me operatically. “OK, Gussie! Let’s visit the nice man, come visit the nice man!” Gus wiggles around a bit, stops, regards the woman as if she were a turd, and barks peremptorily.

“Oh Gussy, that’s not nice!”

Gus strains to the end of his lead as far as possible from me and begins sniffing the lineoleum manically.

“OK, Gus, here’s a treat. Up!”

The rat ambles over and hops dismissively into my lap, staring at his treat the entire while. I pat his turned back while the woman launches into a long soliloquy about his beauty, intelligence and bowel movements. Gus starts edging away, then lets out another yap.

“Oh Gussie, visit the nice man!”

Gus ignores me. I too am calculating how to end this humiliating and bizarre exercise.

Yap!

“Oh, he’s hungry today. One more, Gus.”

We part ways as soon as feasible, the interaction leaving me feeling rejected and smelling heavily of dog shampoo and Purell.
*
We had a similar interaction in New York with a minature poodle named Blackberry. Her owner wore poodle earrings, which is more revealing than anything I could say about the occasion.
*
My most recent and, the way things were going, possibly my last dog therapy visit came yesterday, with lovely Lily the bull mastiff. After she creakily made her way into my bed (it’s higher than some, Lily’s owner reported), she settled in close to me, as if for the night.

I wouldn’t have kicked her out.

Tubular hell

Was snoozing around on the computer late yesterday afternoon when the muscle (trying to think of a word or phrase to convey their junior status that juxtaposes amusingly with their highly refined skills and personalities) of my surgeon's thoracic surgery posse (see above) showed up.

The daily X-ray had shown that something -- either a perforation in the second chest tube, or the end of the tube itself -- was basically at skin level, doing no good and perhaps inviting infection. Five minutes of set-up and a good, firm yank later, and I was tubeless.

Tubeless.

My side and back still ache. I would need a Madoff-style ponzi scheme to pay for enough chiropractic payments or massages to get my tortured body back in shape. Despite my best attempts to look decent, a cleaning guy mistook L. for my daughter today. ("Dude, my daughter is five. I'm 37.")

But that's kvetching. I'm now tubeless and presumably healing. I could move with dramatically more fluency and less fear minutes after the second tube was gone. I slept better than I have in quite a while. Going home suddenly don't just feel realistic, it feels imminent. (It isn't, however. But tomorrow is possible and Saturday a virtual certainty barring significant complication.)

My heart is still heavy, but at least I am tubeless.

...

While the date of my departure from the hospital remains undetermined, I've at least made some progress. They removed one of my chest tubes yesterday with no dire consequences, so they pulled the second tube out about half way today. If nothing bad happens, they will remove it all the way tomorrow, watch for 24 hours or so, and then work on sending me home.

Of course, if the lung immediately collapses after removing the last tube, we're back to where we started, only with fewer options. Presumably, they would install a small chest tube with a one-way valve that I would probably keep more or less permanently.

Meanwhile, I'm dealing with discomfort and anxiety.

I felt like I had been riding along a more or less steady track of healing since I had the VATS and pleurodesis last Friday. Removing the first tube seemed to speed that along even more. Relocating the second tube, however, dramatically increased the pain I'm suffering. My scale for pain these days goes a little like this: aware of pain but can distract myself easily from it (four), highly aware of pain and finding it hard to shake from my consciousness (five), pain dominates thinking (six), pain is bad enough to create ongoing desire to shout or cry (7...) I've spent most of the last several days at three or four with occasional forays to the fringes of five. Today has been five and six pretty much all the way.

And the anxiety? We're wondering what this ongoing stay off-drug means for the study, and we've been receiving contradictory (or perhaps "evolving" is a fairer word) answers from my doctor.

The big question for us has been: We're scheduled to return to NY for a checkup and the 12-week scan next week. Do we still have to go on those dates, or can we reschedule? The big question for Dr. BT has been: Are we eligible to stay in the study at all? Is this pneumothorax possibly related to brivanib, in which case it would be a disqualifying severe side-effect?

It looks like he's pretty much answered his question. The penumothoraces have been an ongoing problem so there's no reason to believe that the drug caused them. So if we're still in the study, what do we do about next week? I had hoped (and even believed, based on my addled interpretation of some conversations) that the study clock froze while we were off drug and I would have my scan a couple weeks after restarting the drug. The doctor doesn't think this is true. About the best he can offer is a scan on Friday (when we are at least in town) and either skipping the required doctor's visit, counting one of our many in-patient visits as a brivanib study visit, or perhaps even drawing blood in Burlington.

This seems awful and depressing for too many reasons to get into right now -- I'm waxing on with a lot of verbosity but very little lucidity -- but I hate the possibility of coming back so soon and I really hate the possibility of going in for a scan having missed a third of the drug I was scheduled to get. I hope there's another way.

*

Original post lacked one of the highlights of the day: A bedside visit from a 130-pound bull mastiff named Lily. In fact, it was an in-bed visit from Miss Lily, who was happy to nestle herself among the pillows and blankets (so much as such a majestic animal can "nestle"), absorb some petting, and fall into a deep, companionable and apparently dreamless sleep.

I also got a nice massage via a free hospital program. Unfortunately, my upper back was killing me at the time so I didn't get all I could out of it. But it was still pretty good.

And so it goes...

I had another procedure on Friday as expected. The surgeon inserted what he charmingly called a "telescope" (and indeed it felt like my thoracic cavity had made room for Mt. Palomar the next morning). After breaking up some adhesions on the surface of the lungs and inserting another chest tube and turning it up to 11, they got the lung to inflate; a pre-requisite to redoing that lung's old pleurodesis. Given the patterns of scar tissue left over from the earlier VATS procedure, they completed most of the pleurodesis through a process of scarification -- I visualize this as a series of cross-hatched light incisions on the pleura and chest wall, similar to the way contractors sink tile in grout.

It was clear that they were conscientious, thorough and slow about everything they did, and I only hope that it lasts a reasonable length of time (eg, forever). The night and day after the surgery were nightmarish. I pushed the pain button and snoozed. I still feel somewhat lousy. I have no idea when I will go home, but the earliest date would be Wednesday, I think Thursday might be pretty likely, and perhaps Tuesday will emerge as wonderful dark horse. The good thing is that I'm too uncomfortable to dwell upon all the sad longer-term aspects of all of this and am instead focused on trying to do things to make things feel a little better right now.

'I only wanted the pain to end'

A sad story of cancer and identity theft:

When death starts to claw deep into your pelvis until you want to scream, she said, you'll do anything to stop it—including taking someone else's identity to get $530,000 in medical care.

I should never read the comments attached by readers to news articles like this. The piece is sympathetic toward its subject, a 28-year-old illegal immigrant with three children and end-stage disease. The underlying facts are morally troubling in all sorts of ways -- that theft was the only way a woman like this could get even remotely comparable care; that similar crimes place hospitals and emergency rooms under enormous financial pressure; that earlier stage treatment that might have saved the woman's life or reduced the costs of her care was neglected because of her destitution; it goes on and on. Read a few dozen comments on the story, however, and the picture gets considerably simpler. The woman, like other immigrants, is a thief. She is a "fake Christian." She deserves no sympathy because of her crimes.

Don't get me wrong. Although hers are crimes I myself might well commit if placed in similar circumstances, they also have consequences. But how can you not see the complexity and the pain in this story? How can you not feel the human desperation?

Belief at the end

I found this tremendously interesting as well as puzzling: Religious Belief Linked to Desire for Aggressive Treatment in Terminal Patients. As a secular person, and one well insulated for various reasons from the dominant strains of American belief, I suppose I have the obvious question. Isn't comfort at the end part of what religion is for? I've read narrative descriptions of what being put on an a mechanical ventilator feels like. It sounds miserable: A cold machine hammering your lungs full and empty, full and empty, full and...

So what's the deal with this?

Terminally ill cancer patients who drew comfort from religion were far more likely to seek aggressive, life-prolonging care in the week before they died than were less religious patients and far more likely to want doctors to do everything possible to keep them alive, a study has found.

The patients who were devout were three times as likely as less religious ones to be put on a mechanical ventilator to maintain breathing during the last week of life, and they were less likely to do any advance care planning, like signing a do-not-resuscitate order, preparing a living will or creating a health care proxy, the analysis found.

The study is to be published Wednesday in The Journal of the American Medical Association.

“People think that spiritual patients are more likely to say their lives are in God’s hands — ’Let what happens happen’ — but in fact we know they want more aggressive care,” said Holly G. Prigerson, the study’s senior author and director of the Center for Psychosocial Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston.

“To religious people, life is sacred and sanctified,” Dr. Prigerson said, “and there’s a sense they feel it’s their duty and obligation to stay alive as long as possible.”

...

Hah!

Sloan Kettering has comprehensive wireless Internet access for its patients and guests, which is great, but Card Blue is inaccessible because of some quirk of the hospital's net-monitoring (er, censoring) software. Sorry about calling your billing staff "pirates," guys. But, as you see, I've overcome censorship and figured out how to get on to the site and update it, striking a blow for free speech... or something.

You might recall that I was set to arrive in New York last week. Which was true. On the long (five hour) train ride down, I started declining, and soon I was dealing with pain, disconcerting bleeding, weaknesss, having difficulty finding enough wind to walk or even stand. There I was, in New York, with my parents and brother all excited about enjoying a "normal" trip rich in shows, fancy meals and companionship, and something was obviously wrong.

My check-up led to a chest X-ray which led to a trip to Memorial Hospital's "urgent care center" which led to getting a tube inserted into my pleural space through my chest wall in a bedside procedure sans sedation. Although I still recommend an interventional radiologist for all of your chest tube needs, having a thoracic surgeon on your case makes a world of difference versus having a regular emergency doctor do the job. Which is good, because the more they intervene on your lungs, the more complicated things gets. The dangerous collapse this time was on the right side, once my "good" lung, which stayed mostly up for at least six months after I had visually aided thoracic surgery. But the VATS procedure and its accompanying pleurodesis left the relevant area cloaked with crunchy scar tissue and adhesions, which complicated getting this most recent chest tube for me and the surgeon. To place the tube, he spent a lot of time feeling around my lung and pleura with his finger, which is an odd and invasive sensation indeed, especially when you are fully conscious and unsedated. (I did get four milligrams of morphine to start with, and more as he poked and prodded my not-tender-enough lung.)

Now what? Limbo. The guy who is in charge is basically busy saving other peoples' lives right now, leaving him too busy to decide what to do with me. So an undoubtedly competent and exquisitely trained member of his time is left to come into my room at six every morning and say in his rolling British/Indian accent, "There has been no change in the lung since yesterday, though we are hoping that it will rise more completely and seal itself. I hope to speak with Dr. B_____________________________ today and arrive at a plan of action soon." I'm hoping that will actually be true today; stay tuned for much, much more.

A prospective perspective on ES prognosis

I've added a couple bolds to stuff that's new or interesting to me below. The abstract is from Clinical Orthopaedics and Related Research:

Prognostic Factors for Survival in Patients with Epithelioid Sarcoma: 441 Cases from the SEER Database.

Jawad MU, Extein J, Min ES, Scully SP.

Department of Orthopaedics, University of Miami Miller School of Medicine, University of Miami Hospital, 4th Floor, 1400 NW, 12th Avenue, Miami, FL, 33136, USA.

Current stratification of prognosis in patients with epithelioid sarcoma (ES) is based largely on data reported by individual centers with a limited number of patients. We sought to identify the important prognostic parameters using the Surveillance, Epidemiology, and End Results (SEER) database. We identified 441 patients with ES in the database and extracted information regarding patient demographics and clinical characteristics. Kaplan-Meier, log-rank, and Cox regression were used for analysis. Disease-specific survival declined until 100 months after diagnosis after which survival was unrelated to epithelioid sarcoma. The overall incidence of ES during 2005 was 0.041 per 100,000 [something like 1 in more than two million; lucky us!]. The reported incidence has increased since 1973, with an annual percentage change of 5.217%. On multivariate analysis, only age younger than 16 years, local stage of disease, or negative nodes and surgical resection of the tumor predicted better disease-specific survival. We observed no increase in survival by comparing decades of diagnosis since 1986. [This implies to me that treatment isn't getting meaningfully better, which I find tough to accept. Hope I'm wrong.] The SEER database shows only age younger than 16 years, negative nodes, or local stage of disease and operability of primary disease independently predict survival in patients with ES. Level of Evidence: Level II, prognostic study. See Guidelines for Authors for a complete description of levels of evidence.

Address known

Short on attractively packaged wisdom? The Humanity Initiative has collected "outstanding" commencement speeches from 1936 to 2008.

The wit and wisdom of a naughty girl (part 4 of a 586-part series)

Scenes of naughtiness:

Little T. rolls into the room, starts strutting around, and proclaims (loudly): "I'm strong and I'm CUTE!"

*

The front door blasts open, doorknob smashing into the hole in the adjacent wall (the Naughty Girl had a phase in which she enjoyed dismantling doorstops), and the NG blows in, clad in a wild pink-and-yellow Hanna Andersson winter coat and her calf-high pink Kamik winter boots. Without ceasing her blur of motion for an instant, she shucks off the coat, revealing her stark naked body (except, of course, for the pink boots). It is 12 degrees outside.

*

For some bizarre reason, I tell the Naughty Girl that I am the only daddy she has.

"No, I have another daddy!"

"Oh?"

"Yeah, Poppa!"

Somewhat flummoxed (Poppa is her grandfather), I say, "Hmmm."

She takes advantage of the pause to add another thought: "But you're sick and Poppa's old!"

*

I think Little T. and the Tiny Art Director could be friends.