No more Vicodin?

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

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'

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

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

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

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...

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'

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

... 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

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.