Card Blue

No more Vicodin?

2009-07-02T15:23:00.002-04:00

A federal advisory panel voted Tuesday to recommend a ban on Vicodin and Percocet. Both painkillers contain acetaminophen, a drug that when taken in very large doses or with alcohol can damage the liver. I was initially shocked by the news -- Vicodin helped me a lot early on with my pain -- but as I thought about it more, it made more sense. After all, one can just take the narcotics in either drug (oxycodone in percocet, hydrocodone in vicodin) on their own, adding or not adding doses of acetaminophen as your doctor advises. At any rate, the announcement is a good reminder of how dangerous Tylenol can be, especially if you still drink a little.

The NYT coverage is here.

Update

2009-07-02T12:07:00.002-04:00

L., my wife and the world's number one supportive pessimist, reviewed my (just typed "our" by mistake) most recent radiology report, and the verdict is in: The news, indeed, was good.

This may sound silly -- the doctor already told us the news was reasonably good -- but it's continually amazing to me how different the report is on paper from what you hear from your doctor. It's not just Dr. BT; he's blunter than most. My oncologist at home, Dr. S, also spins these things within an inch of their lives. And "good" differs quite a bit from "stable" or "not disastrous" or "can stay in the trial, at least." I don't want to exaggerate and say that the tumors are shrinking all around, but there's some reason to hope that maybe next time we'll get a stronger result and actually roll some things back in a significant way. Which would be almost unprecedented -- my cancer hasn't responded really strongly to anything except gem/tax followed by gemzar plus radiation, and that was years ago. So let's hope.

I'm focusing on that because it's getting more difficult to hang with the treatments. I've always thought that brivanib was surprisingly benign, but it's starting to show some teeth. To wit, my mouth is sensitive and painful. I thought there might be some ulcerations in there, but fortunately, there aren't. But I simply can't eat many, many things. Also, my stomach has started acting up. I haven't had nausea, but I have had a lot of issues, including plain old loss of appetite. I suppose that it's not surprising that I'm having more stuff come up, since I've now been on the drug for something like 17 weeks, albeit with a six-week placebo hiatus in the middle.

The other thing, since I'm in a complaining, er, describing mode, is that I'm having increasing difficulty swallowing those four enormous pills every night. I'm pretty sure that the problem is psychological, but it's no less real for that. While I once bolted them down three at a time, I now carefully consider each one, picking it up, putting it down, easing it into my mouth, taking a huge gulp of water -- and almost every time I feel close to gagging. So I wait for a while, then start the whole lugubrious process over again. The whole process takes freakin' forever.

'Writer's Block'

2009-06-30T15:07:00.001-04:00

Michael Ruhlman on writer's block:

When I put up a recent tweet saying writer's block was nothing more than an attempt to justify your own laziness (and not recognizing this was simply lying to yourself), I got a number of angry RT's calling me (at best) smug. To those whom I angered I would say, that's a common response when someone takes away a crutch.

If there is a problem with Twitter though, it’s an inability to express nuance (for most of us, anyway, who don’t have the poet’s genius for condensation).

But here I can say, re: writer’s block: This I Believe:

The phrase writer’s block is an excuse that should be used only by the weak and delusional (or as lighthearted slang for “It’s cocktail time somewhere!”). If you must put a tag on your inability to produce, be my guest. We all know what it means.

Oh-oh.
*
(I've actually always refused to use that term, not that my production is much the better for it.)

Sweet stability

2009-06-25T15:34:00.004-04:00

After an overairconditioned train ride that featured a close-range, cringe-worthy incident between an odd woman and the conductor (Odd Woman, who is trying to strike up a conversation: "My mama was black... [after questioning] well, my governess was." Conductor, in a friendly tone: "Most people don't call their nanny 'Mama.'"), we finally got to the city, crashed and ate dinner. Then the scan, more unpleasant tests, and The Wait.

By about 3:15 in a doctor's appointment scheduled to start at 12:45, and a day that started at 8, we were told that the radiologist thought the tumors looked very slightly worse, the doctor thought they looked very slightly better, and collective verdict was stability for the purposes of the brivanib trial. So delighted to have another six weeks to let this thing work. One of the pneumos is a little better, the other is a little worse. So it wasn't howlingly great news, but I'm very pleased with it all the same. My pulse is back in the double-digits, anyway.

Now it's time for relaxation, friends, a nice dinner and some good sleep.

I Wish I Was Him

2009-06-23T09:14:00.002-04:00

Andrew Sullivan on taking testosterone in 2000:

It has a slightly golden hue, suspended in an oily substance and injected in a needle about half as thick as a telephone wire. I have never been able to jab it suddenly in my hip muscle, as the doctor told me to. Instead, after swabbing a small patch of my rump down with rubbing alcohol, I push the needle in slowly until all three inches of it are submerged. Then I squeeze the liquid in carefully, as the muscle often spasms to absorb it. My skin sticks a little to the syringe as I pull it out, and then an odd mix of oil and blackish blood usually trickles down my hip.

Sick Guy on taking testosterone in 2009:

I pull the largish square envelope from its package, then tear it at its score lines and slip out the flesh-colored disc and set it on my desk. I brace myself as I feel around underneath my clothes for yesterday's patch, then rip it (and sometimes a considerable amount of body hair) away. I take the new disc, puffy in the center with its cargo of synthetic testosterone, and remove its plastic backing. A strong smell of alcohol fills the air as I stick it to my stomach, shoulder or thigh.

The immediate effect for Sullivan:

Because the testosterone is injected every two weeks, and it quickly leaves the bloodstream, I can actually feel its power on almost a daily basis. Within hours, and at most a day, I feel a deep surge of energy. It is less edgy than a double espresso, but just as powerful. My attention span shortens. In the two or three days after my shot, I find it harder to concentrate on writing and feel the need to exercise more. My wit is quicker, my mind faster, but my judgment is more impulsive. It is not unlike the kind of rush I get before talking in front of a large audience, or going on a first date, or getting on an airplane, but it suffuses me in a less abrupt and more consistent way. In a word, I feel braced. For what? It scarcely seems to matter.

For Sick Guy:

I feel nothing, and proceed to knock down the other seven or eight pills I take every evening.

Sullivan:

[At the point I started the injections] I weighed around 165 pounds. I now weigh 185 pounds. My collar size went from a 15 to a 17 1/2 in a few months; my chest went from 40 to 44. My appetite in every sense of that word expanded beyond measure. Going from napping two hours a day, I now rarely sleep in the daytime and have enough energy for daily workouts and a hefty work schedule. I can squat more than 400 pounds. Depression, once a regular feature of my life, is now a distant memory. I feel better able to recover from life's curveballs, more persistent, more alive. These are the long-term effects. They are almost as striking as the short-term ones.

SG:

Three weeks in, and my weight is stuck stubbornly, tragically, at less than 130 pounds. I once wore XL clothes; now I take smalls. I still nap. I do not work out, not unless Wii Tennis counts. My appetite is fragile -- up, then down. Some days I eat almost nothing, forcing down a couple high-protein drinks and a piece of toast. Other days, like a memorable one a while back, I feel different.

I was reading to little B. about castles and swords and dreams of knighthood, when a primal surge of hunger rose up in me and demanded food. I ate a handful of grapes and a sack of pretzels and emerged only hungrier. I rose shakily to my feet and procured two "whip it's!" (a marshmallow-focused confection that is the pride of Quebec) mainly because the cookie sack was already on the counter. Then a square (OK, two) of rum-caramel-filled chocolate. At this point, L. said something along the lines of, "Jeez, dinner is almost on the table." I subsided briefly, but grabbed another handful of grapes. I then proceeded to eat a Close Encounters-like pile of mashed potatoes and some grilled flank steak and spinach.

Sullivan’s NYT essay on testosterone -- which ranges far beyond the personal anecdotes I recount here -- is worth reading, despite the powerful critiques hurled against it, most memorably by Judith Shulevitz. For Sullivan, at that time, the hormone held huge explanatory power backing up a particular idea of competitive, vigorous masculinity, an idea that, if taken crudely, is not so far from the ass-kicking, NASCAR lovin’ sort of guy-dom I satirized here. Another note: It’s striking to compare the effects of Sullivan’s sudden and presumably higher-dose method of delivery to those of my more gradual approach. Perhaps this change in modality, which I assume is widespread, accounts to the fact that people (except, maybe, Floyd Landis) aren’t talking about T. as a wonder hormone any more. I’m still hopeful that it will stimulate appetite and build muscle, but it’s clear that it’s going to take a while.

Will it make me into a better man -- or at least a more manly man?

I don’t think so.

Note on the title: I don’t wish I were him, Andrew Sullivan. It’s a reference to this song by Ben Lee, which is a tribute to Evan Dando. Lee, who looks like he’s about 11 in the video, actually did get as cool as Dando, dating Clare Danes for several years before marrying Ione Skye. Dando, sadly, is apparently still mired in addiction and has almost destroyed his talent and voice.

Quick hits

2009-06-22T11:54:00.005-04:00

Some things that caught my eye recently:

The pristine white coat, that pressed symbol of a physician's authority? May spread MRSA and other nasty bugs. Ties could be bad news, also. Somewhere, my man Dr. Bow Tie is smiling.

Don't read this if you don't want to cry: A little girl dreams of seeing the Pixar movie Up years before its release, but she's too sick to go to the theatre when it finally comes out. The family calls Pixar to ask if they will grant her dying wish, and they quickly fly in a representative with a bag of toys from the movie, a poster and a DVD. I'm dead serious about the crying, by the way. This one hit me hard.

No link here, and I'm seven years late to the party (had to let the critical opinions coalesce, you know), but I have become obsessed with The Wire. A half-baked thought on the show's acting: People always say it's wonderful and I agree, but I've been asking myself why is the acting so wonderful. One factor, I think, is the character's voices; so many of them are deep and resonant, churning with rumbles and gravel, ready for late-night radio. The chorus makes a wonderful sound as it speaks words that ring true. And the guy playing the lead detective went to freakin' Eton for godsakes and had to spend a few weeks learning a plausible accent for a Baltimore detec. I love that.

The iPhone 3GS is very cool. Don't ask me how I know this; I just know. Happy Father's Day indeed.

Rumors of my...

2009-06-22T11:38:00.002-04:00

I was going to make the Mark "Rumors of my demise have been greatly exaggerated" Twain joke here, but I mostly decided against it since I myself am responsible for any rumors or concerns about my health.

A while back, I posted "long silences on cancer blogs are bad business," and I'm sorry to have worked that way myself. I'm fine -- well, fine-ish -- and the radio silence was the result of a lot of things... low-grade depression, the end of second grade (for my son, not me), my ongoing breathing troubles, a nice visit from my in-laws, feeling like I didn't have much new to say, etc.

I forgot that a lot of people read this who aren't in direct contact with me, and I'm sorry for any worries that my absence may have caused. If anything serious ever happens, L. has access to the blog's passwords and I'm sure she will post updates as warranted.

Thanks, everybody, for the notes and good wishes. I'm feeling a little better and much more motivated to start telling stories again. I'll even have news -- my next brivanib CT is on Thursday, so we're gearing up for the tough trip down to NYC on Wednesday. I'm trying to use my new... not sure what to call it... visual mantra?... to keep my anxiety in check. I'll say a little bit more about that soon.

The times, they are a-changin'

2009-06-06T15:46:00.003-04:00

Back from NYC, and there are going to be some changes around here. I'm going to drop the poetry, adopt a new prose style (see below for a sample), add a few matters of consideration to discussion (professional wrestling), and move the food coverage from occasional discussion of cupcakes and recipes more toward canned beer.

Why, you ask?

Because I have been given a prescription for a patch loaded with pure testosterone, baby! Nobody likes the fact that I dropped 10 pounds in the three weeks between NYC visits, especially since I've spent the last week desperately trying to eat more and drink Ensure. This effort started after I got on the scale, weighed in at 129 pounds (I'm a tad over 6 feet tall), and felt a surge of pre-rational terror that I was starving. So the hormone will hopefully reverse that by stimulating appetite and muscle growth.

Much more on the visit -- and the T -- soon. Enjoy the weekend, everybody.

New blogging style, at least until they get the dose right. Punchy, verb-oriented: "Me SG. Me hate cancer. Smash! What on TV?"

Me

2009-06-03T15:56:00.003-04:00

... and everything has been getting harder.

I spent most of Memorial Day Weekend in bed, save for a very diverting visit from some friends and their Bernese mountain dog. Another friend came to visit, and I just couldn't drag myself out of bed to see her, redoubling how crappy I felt.

So what's wrong? My agonizing back pain has faded to the background. But my shortness of breath hit a tipping point sometime in mid-May; it's gotten to the point where I can get breathless walking from one room to another. I feel like the fatigue has lessened slightly, though I don't know if my wife would agree with me. I'm still falling asleep at the wrong time and waking up the wrong time -- I'm keeping the hours of a club kid, and yet I rarely stray far from the couch. For a while I had no energy for the computer, no blogging, no e-mail, no Twitter, nothing; so maybe this is a small, good sign.

In terms of substance, we're heading to New York tomorrow but I don't expect to find out much. It's a brivanib nursing visit, but I think we will see the doctor and get his thoughts on the breathing problem (I'm hoping it's at least partially a side effect) and all the other issues. In terms of goofiness, I've gotten a little ritualistic about my pills again. Back in the chemo-by-vein days, I'd recite a little mantra to myself as the medicine began to flow; when I began oral chemo, I tried to imagine little armies forming to just, I don't know, pop the malignant cells. But anything can become routine, and for a long time, I just swallowed. Lately, though, I've been trying to imagine opening that dull, white brivanib bottle as uncorking that proverbial can of whupass. It's nice to think so, anyway.

What's up with me

2009-05-22T14:15:00.002-04:00

My collapsed lungs pulled me into my pulmonologist's office yesterday. It was about time, the shortness of breath was getting ridiculous.

The bad news was that my lungs "look exactly like someone with emphysema." The good news was that they tested me and I don't need supplemental oxygen.

As you might imagine, it wasn't a fun visit.

I suppose the more meaningful good news is that they aren't going to do any procedure right away to try to reinflate either of the lungs. (My right lung is procedured-out, anyway.) I can muddle along, watching myself carefully, as they huddle up to develop a plan and we schedule something after I've gotten to have some time back on brivanib. The likeliest thing that will happen is that I will have surgery that, essentially, leave a small permanent chest tube with a little valve that can be used to drain out any air collapsing the lung. I doubt this will allow me to resume flying, but it will give everyone peace of mind as I live my life.

The best news is that I have started taking a nerve blocker, neurontin, that has done wonders for my pain. We reduced the size of my fentanyl patch from 100 mcg/hour to 75, I've cut way back on the dilaudid I take for breakthroughs, and I am more comfortable than I have been in weeks. Yay! It's hard to be much of anything to anybody when you are in a lot of pain. The downside, of course, is that the neurontin has left me fatigued in a new way, but there's a good chance that will get better with time. I can also see reducing the fentanyl patch another notch in the near future.

I also had a thought as I left the doctor's office: Could the brivanib be causing some of my shortness of breath? I need to look at the side-effects sheet, but I think that's something that can happen. I may be crazy, but I feel significantly more breathless than I did in NY, even though my lungs look basically the same. Although it wouldn't make a difference in terms of managing it (I can't comfortably walk across the damn house at this point), it would be nice to know that the side effect part of it, at least, was temporary.

I'm also hoping to put something delicious on the smoker this weekend.

***

For other folks with epithelioid sarcoma, on my scans this started first with harmless little speckles (not obviously malignant nodules), that kind of grow a little and pop. (The move is from periods to O's.) This can blow through the lining of the lung and cause a collapse. Also, much of my disease, apparently, is on the outside of the lung, kind of drilling inside. E-mail me if you're seeing this as an early issue; even our highly experienced NY doctor didn't recognize this as a disease process when it was beginning back in 2008.

Sweetness

2009-05-21T15:38:00.003-04:00

A few days ago, T. and I were getting ready for bed and she surprised me by triumphantly presenting Charlie and the Chocolate Factory as her next book. She had watched the movie with a babysitter, and now she was hungry for more.

I was thrilled, and not just because she previously favored a schlocky series of books about fairies produced by a conglomerate under the penname "Daisy Meadows." Charlie was an important book for me, one of the first I read and loved by myself, and I couldn't wait to see how she would react to Charlie's basic decency, the loathsome habits of the book's other children and, of course, the wonders of Willy Wonka's factory.

So far, it's gone as well as I hoped. She's rapt. After the first couple chapters, she regaled co-reader L. and myself with a rundown of what had happened so far. "The boy loves chocolate... and, and, and he only gets it once a year, so when he birthday come, he puts the bar in a box! And looks at it! And, and, and then he pulls wrapper and takes a small, tiny bite..."

Last night, we were reading -- watch out, a spoiler is ahead -- the part where the golden tickets are loose in the world and Charlie is about to get his annual birthday bar. T., who had been squirmy, stills and presses her round little body against mine. Her blue eyes are bright and avid. She is sure Charlie is going to get the ticket right then and there, and she gets progressively more excited as the book builds up toward the moment when the boy pulls the wrapper off his Wonka's Whipplescrumptious Fudgemallow Delight.

I almost feel bad for her -- but at the same time, her entire being is vividly conveying the thrill and discovery of reading, one of my highest aspirations for her. A few years ago, there were a lot of reasons to think that I wouldn't know T. at five. Now there are a lot of reasons to think I won't know T. at 10 or 15. I certainly won't see how her story comes out.

But as I read a great book with a budding great reader, it's clear that, sometimes, the end isn't as important as how you get there. The stuff in between is exciting, too. Charlie rips off the wrapper, revealing only chocolate, and T. is immediately and vocally appalled. "Daddy!" she shouts, as if I were personally responsible for throwing yet another disappointment in poor Charlie's path. T. is furious, but I am secretly and silently delighted. The story continues. Sweetness lies ahead.

Tears of a...

2009-05-20T17:51:00.002-04:00

I let myself cry like a child over my illness today. I did everything except throw myself to the floor and pound the carpet with balled fists. I let myself complain about cancer: I moaned that I was too young, that it wasn't fair, that I couldn't stand the anguish of everyone I love let alone my own pain, that I was tired.......

This is a voice I rarely allow myself to speak -- scream -- with.

When I was first diagnosed, sent shocked and spinning by the unreality of it all, one simple question persistently bubbled into my mind, and I grabbed on to that query and let it buoy me as events and anxiety churned around me ever higher.

It was: How do I want to live?

Live.

It was such a liberating idea: I was seriously ill, yes, but I had a choice -- a multitude of them, every day -- and I could use the intensity of living a life at risk as a tool to find better answers. I might not get all the life I wanted, but I could get closer to being the person I wanted. This question, unlike most of the other ones swirling around -- what second opinions should we get? is this treatment going to work? how long am I going to live? -- had answers, my answers. And the conclusions I drew from it pointed toward life instead of death.

We know that fairness has nothing to do with cancer, and that thinking about one's situation in those terms is a dangerous distraction; it's the signpost that points toward disengagement and death instead of acceptance and life. Yes, it's not "fair" that I got sick at 34 and my kids and wife won't get to spend the time with me they deserve. It also wasn't "fair" that I was born vastly more wealthy than 99 percent of the world's population, or that children in Africa are dying unnecessarily as I type this, or 20-year-olds are coming home from wars with multiple amputations, or...

Feeling this way, knowing these things, makes it very hard for me to just straight-up unabashedly feel sorry for myself. (Or at least to admit to feeling that way.)

That's a good thing most of the time.

But even though my eyes feel like they've been rubbed in sand and I have a headache, I'm glad I let myself bawl for my body and my life without an intellectual screen filtering out "improper" thoughts. I still ask myself all the time, "How do I want to live?", and that question will, at times, inspire me to push myself off the couch with both fists and find one of the children to embrace. But one way I don't want to live is to be in such strict control of my thoughts and emotions that I never let myself express an intellectually nonsensical feeling. Fairness has nothing to do with cancer -- but today I felt like it did, and I let myself say that and cry for the loss of the life that I imagined I would have.

Right now, though, I'm going to get back to work.

Ooof

2009-05-20T12:30:00.001-04:00

For some reason, this hit me like a punch in the gut. A post on the Sarcoma Alliance bulletin board lamented how difficult it is to wait for results of various sorts of tests. A no-brainer, right? We all hate the waiting game. But Olga, a prolific and highly knowledgeable poster there, began her reply this way:

Re: Hating the Waiting
by Olga on Mon May 18, 2009 4:59 pm

Gail,
for many on this board the waiting time is all time they have - and paradoxically it might be the best time that they have left before they start treatments or they get the bad news so I strongly suggest to the people reconsider your attitude to a waiting time trying it to pass faster, it is better to enjoy it then discount it, use it to do something really good for yourself and the family that you might not have a chance to do later if ever.

I find this harsh, depressing, slightly out-of-place and, sadly, more true than I would like.

It is hard to wait. But it is also hard to process bad news, and, no matter how much we might claim otherwise, the stress of waiting on a result isn't as bad as being confronted with a terrible reality. For people who have metastatic cancer, and have made whatever accommodations they can to regular doses of bad news and a problematic future, waiting can be an act of hope. The cancer rock has already fallen, so as long as you are waiting for a CT or MRI or whatever, your situation could be improving. When you get that report, though, the news is there. The result is the result. And, too often, the facts are worse than the fear.

Not good

2009-05-18T10:43:00.004-04:00

The CT showed a number of specific changes to my lungs -- they've formed a variety of pits and nodules -- including the collapse of my recently re-operated on right lung. They also found growth in the tumor on my hip muscle and growing lymph nodes up along my spine, which may explain why I've had a such a terrible time in terms of pain and mobility over the last few weeks.

They had already called the drug company when we went in to discuss these results and, indeed, I was taking the placebo. So now I will see if the real drug can do anything for me. Perhaps it can -- I certainly was doing a whole lot better on drug (if only for a little while) than without it.

I was feeling lousy before the news, and now I feel worse: hearing it seems to have (temporarily, damn it!) drained the well of optimism, strength and BS I use to get through this whole thing. Yes, I'll absorb this and move on and learn how to manage the symptoms better, but right now I can barely function.

Gone fishin'

2009-05-12T20:35:00.001-04:00

Well, not exactly. We're going to New York again tomorrow for a six-week brivanib doctor's appointment. I will have a CT scan and we will decide where we are at. It's a little hard to know what to hope for in light of the placebo issue. Part of me wants there to be absolute minimum progression, just enough to break the code and re-prescribe the live drug. Part of me thinks that stability (and by this I mean the tumors more or less staying still, not growing 14 percent for technical "stability") on placebo would be great, since I'm dealing with a lot and need all the rest I can get. And, of course, there's the fear that the tumors have broken out of the box and run wild over the last six weeks. I'm trying to deprive that thought of oxygen, though.

And, hell, the tumors could just all be dead. That would be fine. Preferable, in fact.

All this to say that I will probably blog the results if I can, but not much beyond that. L. introduced the dream of seeing the late Picasso show at the Gagosian, which would be amazing if physically possible. (Here's an audio slideshow about the show.) There will also be dinners, of course, hopefully amazing ones. And yes, cocktails on the Soho Grand's luxe couches, where the lighting is so sweet and the ceiling so beautiful that for minutes at a time I can sit there with my lovely wife and feel glamorous, a sensation in short supply in my real life.

The quality of attention

2009-05-12T14:22:00.002-04:00

I'm not sure if the book will live up to the promise of its topic and thesis, but I enjoyed this review of Winifred Gallagher's book Rapt. It's a subject dear to my heart: I've never been great with full and focused attention, even before the internet, and I'm more vulnerable than most to the rich range of distractions connectivity offers... facebook, twitter, blogs, sports bulletin boards, wikipedia, the netflix queue. This innate vulnerability is exacerbated by my current situation -- quite often, I'm looking for distraction.

And yet attention offers such rich rewards (the quote is book reviewer Laura Miller laying out some of author Gallagher's thoughts):

Winifred Gallagher's new book, "Rapt: Attention and the Focused Life" argues that it's high time we take more deliberate control of this stuff. "The skillful management of attention," she writes, "is the sine qua non of the good life and the key to improving virtually every aspect of your experience, from mood to productivity to relationships." Because we can only attend to a tiny portion of the sensory cacophony around us, the elements we choose to focus on -- the very stuff of our reality -- is a creation, adeptly edited, providing us with a workable but highly selective version of the world and our own existence. Your very self, "stored in your memory," is the product of what you pay attention to, since you can't remember what you never noticed to begin with.

Gallagher came to appreciate this while fighting "a particularly nasty, fairly advanced" form of cancer. Determined not to let her illness "monopolize" her attention, she made a conscious choice to look "toward whatever seemed meaningful, productive, or energizing and away from the destructive, or dispiriting." Her experience of the world was transformed. This revelation naturally led her to wonder why she'd had to exert herself to do what made her feel better. Why didn't she turn to it as naturally as a thirsty woman turns to a glass of ice water? Why do we reflexively award more attention to negative or toxic phenomena like disasters and insults, while neglecting to credit small pleasures and compliments with the significance they deserve?

Bonus: If you enjoy the HBO series In Treatment, as L. and I very much do, check out Terry Gross's interview of Gabriel Byrne. His thoughts on the centrality of listening -- not to mention his clever riffs on desire, the priesthood and Ireland -- are well worth forcing oneself to sit still for a half-hour and focus...

Dog day

2009-05-11T17:58:00.003-04:00

You wouldn't know it from my rant against The Repellent Gus, but I love therapy dogs. (It's the people who come along I'm skeptical of...) So I was disappointed to read of a study that indicates that they can become agents of death, spreading MRSA and nasty vancomycin-resistant fecal bacteria beyond the hospital doors. Possible remedy: Don't kiss the dog and do the Purell before and after.

Here's the NYT Well blog:

Canadian researchers studied 26 therapy dogs who visited patients in hospitals or long-term care facilities. Before and after each visit, a dog’s forepaws and the hands of its handler were tested for three bacteria that commonly cause hospital infections — Methicillin-resistant Staphylococcus aureus (MRSA), vancomycin-resistant enterococci and Clostridium difficile. To detect whether a dog was carrying germs on its fur, the researcher also sanitized her hands, petted the dog and had her hands tested for the pathogens.

None of the dog paws, handlers or the researcher tested positive for the bacteria before the hospital visits. But after the hospital visits, two of the dogs were contaminated. One dog, a greyhound, had C. difficile on its paws. Another dog, a pug, appeared to pick up MRSA on its fur. (MRSA was found on the hands of the investigator after she petted the dog upon its return.)

So how did the dogs end up as carriers of the risky germs? The dog with C. difficile had shaken paws with several patients. The pug with MRSA on its fur had spent time in patients’ beds and was kissed repeatedly by two patients.

Color

2009-05-11T14:06:00.003-04:00

Since I talked about feeling gray, here's Barbara Kingsolver in the title essay of her collection High Tide in Tucson:

In my own worst seasons, I've come back from the colorless world of despair by forcing myself to look hard, for a long time, at a single glorious thing: a flame of a red geranium outside my bedroom window. And then another: my daughter in a yellow dress. And another: the perfect outline of a full, dark sphere behind the crescent moon. Until I learned to be in love with my life again. Like a stroke victim retraining new parts of the brain to grasp lost skills, I have taught myself joy, over and over again.

I'm not there yet, but I'm trying.

Down with the gown

2009-05-11T10:09:00.006-04:00

A hospital gown's design seems frivolous -- until you are doubled over with fever and exhaustion and chemo trying to tie the damn thing up with trembling fingers.

Today's Wall Street Journal has a nice piece about fledgling efforts to reform the johnny. How about making it easy to fasten? A pocket, perhaps? Make the fit a little more flexible and less prone to indecent exposure? And, of course, any new design also has to be ridiculously durable and affordable if it is to have any chance of replacing the old:

The traditional American hospital gown -- flimsy in front, open to the breeze in the back -- has been around about as long as the Band-Aid. If anything, it has changed less.
The one-size-fits-none garment remains one of the least loved aspects of American medicine.

I have a little more about the healing power of hospital aesthetics in this old post.

A faded poster of golden retriever puppies peeking out of pastel flower pots was taped to the ceiling directly above the bench where patients lie [during radiation]. I guess the idea was that people could distract themselves with fluffy puppies while their flesh burned.

... and something genuinely encouraging

2009-05-08T13:42:00.003-04:00

It was posted in 2006, but I enjoyed reading Jeanne Sather's piece Don't Write Me Off in the midst of my grays. Four-and-a-half years ago, an M.D. Anderson doctor told her further treatment for metastatic breast cancer was "... reaching the limits of futility."

Futility. It's 2009, she has other doctors, and she's vehemently still here.

The piece also reports on yet another M.D. Anderson dirty secret: They don't routinely give second opinions (at least not to breast cancer and sarcoma patients). Why not? They aren't profitable.

Fear not, y'all!

2009-05-08T13:33:00.003-04:00

Senator Arlen Specter is on the case.

The man with no friends -- Republicans, understandably, despise him and Democrats, understandably, mistrust him -- is going to beat cancer. In fact, he is going to build a bridge over the valley of death.

Feel better?

specterforthecure.com:

For years and years, billions of your tax dollars have paid for medical research. There have been great discoveries – actually, we learn more every day – but where are the cures?

Between scientific discoveries and treatments which help ailing Americans is what many researchers call a “valley of death”. People are suffering, even losing their lives, who need not.

Today, that starts to change. Senator Arlen Specter intends to build a bridge over the valley of death.

Gray

2009-05-07T18:15:00.004-04:00

I'm trying to write and nothing comes. I've always found the bad times the hardest to capture: It's easy to get motivated to tell stories or to show what the kids were like in the hotel pool, gleaming and streaming like pale seals, hair slicked back so their bright eyes and huge grins seem bigger than life and suddenly grant fresh understanding of the word "radiant." But the blah stuff, the grinding pain, melancholy, worry, sleeplessness -- who cares about that? Or, rather, who cares to write about it?

I want to be honest, but I also have an intense desire to be liked. We are conditioned to be cheerful and optimistic, after all. Or at least to overvalue those traits. I imagine my pain making me unlikeable -- after all, I don't like it. I'm not going to break through that barrier today, and I probably lack the skills to illustrate what the last few days have been like even if I cared to. My writing palette lacks the number of shades of gray I would need to delineate the mental and physical ache of a stubborn disease.

I'm in a gray place: Thick, clammy fog or the smear of a dirty pencil eraser. I am curled up there hurting and waiting for the love of my family to bring me once again into the light.

H-E-double hockey sticks

2009-05-06T17:47:00.003-04:00

I was perusing the Sarcoma Alliance blog and stopped to chuckle at a T-shirt someone was wearing at a benefit run: "What the hell is a sarcoma?" (I have answers to that, yes I do.) I kept reading and found that the shirt had provoked a minor controversy, spawning a redesigned version sans the blunt reference to a place of eternal torment. Both are available here.

By the way, I'd encourage sarcoma patients to repopulate the once-useful resource of the Sarcoma Alliance's bulletin board. A switch to new software and a different registration process seems to have reduced traffic there, which is a shame.

Sarcoma on Twitter

2009-05-05T15:36:00.004-04:00

I didn't see the point of Twitter from reading about it, so I signed up for an account a few days ago in order to get a sense of what it was all about. I didn't want to use my real name -- and I thought "Sick Guy" might sound weird without any context -- so I made a millisecond decision to log on as sarcomaguy. (I guess that choice tells us, again, what's usually on my mind.)

After a few days of goofing around reading what some smart writers and bloggers muse about when they are procrastinating, a strange thing happened: Some strangers decided to become my "followers." Since one can hardly disappoint a "follower," I wrote a couple of posts, er, "tweets." I've now impulsively decided that I am going to try to keep sarcomaguy updated with little observations, tips, links and thoughts from the world of sarcoma. I don't envision that many people will be checking it in real time on their cell phones, but I will also occasionally post personal breaking news -- scan results and the like. That said, the focus will be broader (and shallower) than here -- I'll probably link to some of the great stuff that, say, the Liddy Shriver Sarcoma Initiative puts out that doesn't directly apply to epithelioid sarcoma. If the feed can attract a little interest, I'll do my best to find good stuff to share on it.

Anyway, feel free to join my tiny band of followers and say hello if Twitter interests you.

Must I live with you, Pain?

2009-05-05T09:51:00.003-04:00

Bill Stuntz is a professor of law at Harvard facing metastatic colon cancer. He is also a conservative and evangelical Christian. His blog is wonderful, but I rarely read it -- a shame, since every time I do, I find something that influences or echoes my thoughts. Today I found at least three things I wanted to link to or comment on (including an interesting idea for Souter's replacement), but I'll stick to this poem about pain by Edna St. Vincent Millay.

And must I then, indeed, Pain, live with you
All through my life? Sharing my fire, my bed,
Sharing — oh, worst of all things! — the same head? —
And, when I feed myself, feeding you, too?
So be it, then, if what seems true, is true:
Let us to dinner, comrade, and be fed:
I cannot die till you yourself are dead,
And, with you living, I can live life through.
Yet have you done me harm, ungracious guest,
Spying upon my ardent offices
With frosty look; robbing my nights of rest;
And making harder things I did with ease.
You will die with me: but I shall, at best,
Forgive you with restraint, for deeds like these.