Wednesday, May 30, 2012

HBO, Day 2: The King's Speech

Awfully good movie. Odd way to see it. (Yesterday, I watched 'The Visitor'--also an excellent film.)

Note to self:
Isotonic exercises and crunches appear to result in sinus aches when done in a hyperbaric chamber. 

Tuesday, May 29, 2012

HBO Special

Today, I had a hyperbaric oxygen treatment.

I spent ninety minutes at two-and-a-half atmospheres of pure oxygen with two five minute breaks of two-and-a-half atmospheres of 'medical air' to prevent oxygen toxicity. It took fifteen minutes to go from one atmosphere to two-and-a-half, and fifteen minutes to go back. That is a long time to lie in a clear acrylic tube the size of Fat Albert's coffin.

I survived. I watched a movie. I will do it again tomorrow.


Thursday, May 24, 2012

Dr. Tumoriffic's All-Natural Blood Pressure Control Secret

The other day, as I discussed starting blood pressure medication with a patient. He said, "but isn't there a natural way?"

I hope I didn't drop my professional demeanor, but I found the question profoundly irritating.

The answer is, at least for some people, sure, there is a natural way. Only it's not what he was thinking. He was hoping there was some herb or vitamin pill that he could take to lower his blood pressure for a few cents a day with no side effects. There ain't no such thing.

'Natural' has come to mean easy and risk-free. It is a marketing term like 'classic' or 'authentic' that is rarely used meaningfully anymore. Easy and risk-free remedies only seem natural in a culture where it feels natural to flick a switch and have light, where food can be kept for days or weeks without spoiling, where poop disappears down the drain without contaminating your water, and anyone can hop in car, a bus, or a plane and travel hundreds or thousands of miles in a day. Easy answers are not natural, but artificial, and they often come with side effects.

The genuinely natural, pill-free way to treat blood pressure is not easy, nor is it free of side effects. If a patient's pressure is not at so-high-their-brain-is-about-to-burst-out-their-ear level, I may encourage them to try it. Here's the secret, natural way to lower your blood pressure and live longer: get enough sleep: exercise several times a week, the more the better; eat an unprocessed, mostly plant-based diet with moderate protein and fat, generally, the less the better. If your weight comes down, your blood pressure might as well. Now, keep that up for the rest of your life. Side effects include orthopedic injury, wardrobe malfunction, and culinary ennui. You'll probably still need a pill when you get old, because it is a normal part of aging.

Most often, my patients can't do the natural way. Their work hours and commutes are too long, and they have to take care of families. They would cut their hours, but they don't want to be singled out as the one at work who obeys the limits of human physiology, or, maybe, they just need the money. Usually, I end up having to put them on a pill or two. Most people whose blood pressure is successfully lowered with pills live longer than they would have otherwise and do not have side effects. Not all.

Now, if they ever market a weed as effective at lowering blood pressure as a pill, I guarantee you that it will be annoying to take properly and have side effects--just like a pill.

For a Breath of Fresh Air, Go to Manhattan

The developments are coming so fast and furious, I'll put off finishing the second part of the last post. The part of the last post that I edited out can wait, since it does not further the plot. Meanwhile, the plot (or the snot) thickens.

Last Friday morning, I had an intake interview at the hyperbaric facility. It was extremely odd, since the intake appointment was with a doc who moonlights for my practice group, using my exam rooms and my literal office. A few hours later, Dr. Duchess of ENT, colleague to Hygeiea, Greco-Roman Goddess of Otolaryngology (my apologies to the Duchess that good goddess pseudonyms are hard to think of sometimes) installed tubes in my eardrums so my head doesn't explode when they're changing the pressure in the HBO chamber. That seems wise.

Things got really confusing on Wednesday. We took the long train trip to F'in' Famous Cancer Hospital to see Dr. The Fixer, plastic surgeon and man of mystery. Then, we took a walk uptown to Lummock Hospital, the new stomping grounds of Dr. The Coach. These men, along with Doctor Mister Rogers, performed the giant operation that saved my life and my right eye in 2005, plus a couple of other procedures. In March, when I had my clival cleaning, Dr. The Coach had been away on a 2-and-a-half month sabbatical/lecture tour before he settled into his position at Lummock.

Here is another odd medical fact I would like to impart from my adventures. Once you have had a lot of surgical procedures in an area as complicated as the sinuses and throat, your face is not just that of an okapi. As the various surgeons are telling me, it's like a game of pick-up sticks. A quick scrape-out back through the nose to the clivus as was just done to me is one thing, but it is another to squeeze a tissue patch back there that is big enough to cover my clivus and has blood vessels long enough to plug into good circulation. It would take a large incision through tissues that have been cut and irradiated and scarred many times.

Both Dr. The Coach and Dr. The Fixer have independently concluded that, with what the inside of my face has been through, a graft is a risky proposition, and everything else should be tried first unless I am on death's door from an infection. I am not sick enough to need such a drastic move. Dr. Mister Rogers and Dr. The Fixer as a team have done four or five similar procedures that ultimately went well, but they were nothing to be undertaken lightly. (Incidentally, they do like the HBO and nebulized antibiotics. They are inconvenient, but noninvasive interventions.)

Meanwhile, to further muddy the waters, the Medical Mafia were speaking to Dr. Proton, a grand old man of radiation. He thinks that the clivus must be covered some day, but not to rush it. I just hope I can wait long enough for someone to invent spray-on, vascularized mucus membrane.

He also told them that someone who has received as much radiation to one spot as I have in both childhood and adulthood is virtually unique. Oh. Good. It's nice to feel special.

As I was writing this, Dr. Treabeard, the Famous ENT Surgeon just sent an e-mail. As soon as I can be squeezed into his busy schedule, he wants to sit down with me and Kathleen and discuss surgery. He notes that he will probably have to go in though the old incisions. Oh. Lovely.

Are you confused yet? It means you're paying attention. I have top flight physicians in top flight institutions disagreeing throroughly with each other. Why? I wrote several paragraphs of speculation, but that's a waste of everyone's time, so I just deleted it.

This is my plan for now: This is life and death. I will give a respectful and attentive hearing to Dr. Treebeard. I will probably check with a couple of other leading lights at the nearby medical Meccas. I will talk to Dr. Hygeiea, who is a friend, a first class doc, and geographically the closest of them. Then, I will ask the 2005 team, now at F'in' Famous and Lummock to tell me what they think of what I have been told. I may ask them to speak with Dr. Treebeard directly. I have entrusted my life to these surgeons many times, and they have proven their worth personally to me as well as in multiple clinical trials. K and I will, at the end of the day, probably defer to whatever they recommend. B, being 8, has no choice in the matter. For now, it looks like no surgery, and what a relief that is!

Wednesday, May 23, 2012

It's 'Snot Over

This was originally going to be a ridiculously long post. K persuaded me to cut it in two, so it ends in a cliffhanger. This part of the story may give nonmedical people an idea of how difficult medical decision-making is when patients have rare or complicated problems. The right answer is not always obvious.

Ever since Dr. Hygeia, Greco-Roman Goddess of Otolaryngology, discovered that I had some truly nasty snot left over after surgery, life has been a whirlwind again. While this is no tumor, it's the biggest deal since my last tumor in 2005.

I had a follow-up appointment at Ben and Jerry's Hospital with Dr. Prince Clivus Jr. and Dr. Bug, the Downtown ID Guru, and they unexpectedly whisked me down the hall to the office of the Dr. Treebeard the famous ENT surgeon. (This sort of behavior is what impressed me about F'in Famous Cancer Hospital. There was a seamless cooperation among the specialties, so that when I, the patient, showed up to see one, I saw all three. Now, this part of Ben and Jerry's Hospital seems to work like that.)

Dr. Treebeard is a tallish, thin, late-middle-aged man with glasses, no beard, a gentle smile and air of self-assurance in his chosen field--radiation-induced osteonecrotic mutant booger clivuses from hell. This man makes his living fixing Okapis like me, often by grafting skin from somewhere else onto parts that wouldn't heal. (Makes you wonder how the real okapis got their zebra-like hind quarters. Trans-specific graft?) Usually, he is able to take local, redundant tissue, move it around, and cover the hole. However, I have had so much radiation and surgery to that area, there is hardly anything left there, and none of it redundant. So, he proposed that he might 'harvest' a piece of my inner forearm skin and attach it over my clivus, hopefully putting an end to this die-off-dry-off-bug-off (i.e., get infected)-cut-off (i.e., get surgery) cycle I have entered.

This sounds like a real barrel of monkeys. I haven't had a major surgery since way back in 2007, and if you don't practice, you get rusty.

To add to the surreality of the experience, he also proposed putting me in a hyberbaric oxygen (HBO) chamber for two hours a day 5 days a week for 4 weeks before surgery. (An HBO chamber looks like the suspended animation chamber in which John Hurt awoke during the first scene from Alien. Only, I will avoid getting too close to the slimey, egg-like things in the basement.) Anyway, with HBO, I'd get to catch up on Game of Thrones (not really - not the sort of thing you watch with nurses and other patients in the room), and the pure oxygen at 2.5 atmospheres would, theoretically, improve the oxygen supply to my clivus and surrounds. In the best case scenario, normal local mucosa would grow back over, and I would get 10 more sessions and a pat on the head, but no surgery. More likely, though, I would need surgery. Ugh.

So, Dr. Bug, Downtown ID Guru, called me the next day. He had given a talk on HBO and infection at a medical conference a few years ago. There was a lot of hype, but not strong evidence. There were studies that supported, and studies that did not support. The net effect looked like it approached placebo for dealing with infections, and there were adverse effects too.

My rule of thumb is that when the sum of studies shows a very small effect that approaches statistical and clinical insignificance, there is no real effect. This is due to something called 'publication bias.' Positive results are more likely to get published and thus factored in. The negative studies get filed away, because who ever gets famous publishing downers? (And yes, who expects the drug company to fund your next study if the last one you did laid an egg in public?)

Dr. Bug and I agreed that it might be a substantial waste of time and money, but also agreed that it made sense to do a literature search to see if any new data have come out since his talk or if there is some other way in which it might be helpful other than treatment of infection. After all, Dr. Treebeard, the Famous ENT Surgeon is no slouch and would not make such a recommendation lightly. (I'm told he is exceptionally slow and thoughtful with important decisions.)

Well, thanks to the best medical literature searcher I know (my K, my wife, and attorney by profession), I soon discovered that HBO appears to have very good results with radio-osteo-necrosis! In addition, it can apparently be used to improve the chances of success for exactly the kind of surgery Dr. Treebeard, the Famous ENT Surgeon was recommending.

The way that HBO is used in conjunction with a flap graft over radio-necrosed bone in a case like this is called 'the Marx Protocol.' Surprisingly, it does not involve the proletariat rising up and seizing the means of production, nor does it involve a duck. However, the Marx Protocol fits me perfectly. In a study of slightly narcissistic, white, upper-middle class doctor-lawyers. . . No. Start over. In patients with radio-osteonecrosis (bone that has died off from irradiation), after all the dead tissue has been surgically removed (as it was for me on March 28), twenty sessions of HBO can cause proliferation of new blood vessels, which prepare the site for a successful graft. Ten more sessions after surgery top it off can facilitate healing.

So for my particular problem, done in this particular way, HBO looks like a very good idea. As far as we can tell. Based on limited data. Probably. We think.

Quick digression. Dr. Bug, Downtown ID Guru is probably as brilliant an infectious disease (ID) specialist as you can find anywhere. (Having almost been an ID specialist, I know plenty of greats.) However, modern medicine is so broad and complex, that no one can know all of it at all times. As Dr. Mark Crislip, an ID specialist and blogger puts it, "it's like trying to drink from a fire hose." If you step a little bit out of your are of expertise, you often will not have the answer at your fingertips.

So, if you, as a patient, are a horse (e.g., have an ordinary heart attack, pneumonia, or whatever), your docs have probably dealt with dozens of horses, so you are probably in good hands. When you become a zebra (maybe a more than a couple of common problems at once, or one strange problem), or worse, an Okapi (me and a few other weirdos), you have to stay on your toes and double check things. Get second opinions. Look stuff up (using reliable sources only). Trust, but verify. (Who said that line? One rhetorical dollar for the right reference.)

Okay, back to the story. All of this has to happen very fast. The longer I breath on this radiation-damaged, but living bone, the more likely it becomes that it will dry off and die off, making the Marx Protocol useless. The graft could die in less time than it took the Paris Commune (and no, lefty friends, it's not too soon to joke about that). Thus, the clock is running, and there is an army of insurance bureaucrats arrayed against us to make sure we either cannot get what is needed on time, or we go bankrupt.

Stay tuned for more madcap clivus adventures when I update with what would have been the second half of this post1

Tuesday, May 15, 2012

An Import of Insurance Malfeasance

Life is happening too fast to record. Each time I start an entry, it's obsolete by paragraph 2. I'll wrap my head around some of it and publish soon. In the meantime, I want you to see yet another tale of insurance company misbehavior written by and about my friend, Tom, whose blog is here: Citizen of Oa.

Saturday, May 12, 2012

As Close to Nirvana as a Day Can Get and be Legal

Written May 6, 2012
I have decided to take a short (hopefully) sabbatical from work.

Within the space of a little more than a month-and-half, hearing that "you had a stroke and have a probably hideously fatal cancer," followed by "no, probably just chronic, needing lifetime, low-level chemo," to "lickety-split surgery" (not the GYN kind) followed by "oh, just a drug resistant osteomyelitis that will require at least 6 weeks of toxic antibiotics" to "oh, just a dead bone and a mutant booger, but we should keep the same treatment," to "we'd better stop the antibiotics, because they're giving you chemical hepatitis and other stuff," to "gee, that looks like a new piece of dead bone and tissue with a drug resistant pus icing just like a month ago, but don't worry, you can fix this by snorting antibiotics," to "well, back to the O.R. with you and what's left of your clivus," to "JUST KIDDING ABOUT THE O.R. (probably)," and "there is still the matter of that little stroke" can be a bit distracting.

Despite myself, during these six weeks, on and off, I have continued to see my patients as close to full time as I can. I have made several of the best catches of my career in the office, but that only goes so far when new tests and (my) doctors' appointments disrupt the day with regular irregularity. My pace has slowed to a crawl, and my mind is a little preoccupied. So, work and I have agreed that some time off is warranted.

However, I am the kind of guy to see the glisten on any dogpile. This is my first real vacation since the first day of medical school. I have temporarily absolved myself of all adult obligations that are not spousal or parental. For a brief moment, I will only be a father, a husband, a patient, and a dude. This is incredibly liberating. Even during the darkest days of osteosarcoma treatment, I still worried that I had to study for the Medical Boards and still was a public health activist. (The latter helped keep me from regressing to total childishness, but I can allow that now--for a minute.)

Time off was clarified on Thursday, and on Friday and Saturday, I had the best possible time I can imagine short of annoying the DEA.

On Friday night, K and I attended a live Nerdist Podcast, where three excellent standup comedians did short monologues mostly about their penises and then convened to revel in their geekitude. I laughed so hard my bowels hurt.

This morning, I slept in, but got up early enough to go to an early showing of The Avengers with K, B, and some friends. During the scary parts, B would come sit on my lap, and I would tickle his back. Again, I laughed almost to tears.

Then, we visited my sister-in-law's house and had some quality time with her dog and my brother-in-law's brother's puppy. I then attended a hearing at the Food Court, where I tore my yaki at the House of Maki, while B spent his allowance on some Legos.

After that, while our sons entertained each other, I went on a hike on the Freedom Road with my buddy Joel. We saw a herd of deer and met Mezozoic Myrtle the Big Snapping Turtle. (She was in a mood. It is egg-laying season, so she was particularly snappish.) See video:

Finally, K drove to New Hampshire, while B and I poured over a Lego catalog in the back seat. In New Hampshire, we attended a wonderful outdoor Cinco de Mayo party hosted by one of and attended by another of my very best ever friends from residency or anywhere. I played the guitar and sang, K sang, and B played the Bauran through rousing renditions of Hombre Muy Gordo (to the tune of Guantanamera), The Old MacDonald Blues, and Closer I Am to Fine. That little set was a longstanding dream realized for the first time.

We concluded the evening with a ride home with me and B in the back seat playing a pacifistic (at least after I had destroyed all dangerous competition) victory strategy on Civilization V on my laptop. He also asked questions way too advanced for an 8-year-old about what was the Great Depression, what is the Great Recession, what is inflation, what is deflation, etc.

The only way the day could have been more perfect is if I had remembered to charge my the battery for my fancy camera.

Eventually, and many times more, it will be back into the breach, but for now, forget it, Henry V. I'm taking some well-deserved R&R way back behind the lines!

Friday, May 4, 2012

The Immortal Booger!

AAAAAAAAH! It's still there! It's like the evil clown in the horror movie. You were sure you got away, that he was killed when the steamroller crushed his screaming form into the cement. But somehow, like a malevolent beachball, he has reinflated himself and is now standing calmly, two feet behind you and chuckling to himself.

I visited my friend and colleague, Dr. Hygeia, supermom and Greco-Roman goddess of Otolaryngology, yesterday. She took her magic scope and looked up my nose at my exposed clivus. She saw puss and dead tissue, just like before the surgery and before the four weeks of intravenous triple antibiotics.

Schmidt! Frack! Darn! Brotherclucker! This means the antibiotics didn't do doodly-squat! Of course, in retrospect, why would they? The whole problem was that that spot gets no blood, so what would an intravenous anything do for that? On the bright side, the fact that no blood gets in means none got out to infect the rest of me, but it's only a matter of time. No one needs a seething cesspool behind their face.

"You might need another debridement," Dr. Downtown ID Guru says. "What?" I say (totally ignoring the 'might' part). "Then when does it end? You cut out the infected tissue and sand down to living bone. I go home, continue to breath on it. It dries up, gets reinfected, and we have to do it all over again in a month? Is there an endpoint? Do you want my face to end up looking like something in a funhouse mirror?"

Luckily, out here in the boondocks, Dr. Hygeia had recently visited Q, and Q has a nifty new device to nebulize (make into a cloud) antibiotics and antifungals so you can snort them through the nose like the finest Colombian. I would get less medicine with more of it going to exactly the right place. "Oh," says Dr. Downtown ID Guru, "she might be onto something!"

This might keep the infection at bay until someone invents something that will patch it permanently. Maybe I'll join the Borg!

Stay tuned. Looks like we've been approved for another season.

Tuesday, May 1, 2012

No More Antibiotics (Abx)

Hello, friends, friends-not-yet-met (a.k.a. strangers), and family!

They stopped my antibiotics early on Friday and took that nasty PICC line out. I'm very happy, but I'll have to explain why another time.

But for now, here's a traditional ditty for Beltane. Funny how so many Christian rituals have a pagan origin!

It's Beginning to Look a Lot Like Beltane
(to the tune of 'It's Beginning to Look a Lot Like Christmas' by Meredith Wilson)

It's beginning to look a lot like Beltane,
Everywhere you go.
There's a bonfire on the hill,
And the druid is mixing swill.
He's sharpening a knife to sacrifice some Romans!
It's beginning to look a lot like Beltane,
Soon, the dance will start,
And the warrior guys will bring
All the prisoners from last spring,
And cut out their hearts,
And cut out their heaaaaaaaaaarts!

Happy Beltane!