When the doctor told me, he said that if you’re going to get it, this is the one to get. It made feel as if I’d just gotten an upgrade on Cancer Air. It was caught very early, found in only 5 percent of one of 12 samples gathered by shooting a harpoon gun into me (where, you don’t want to know). So I am lucky.
I’m reminded of a brainstorming session I went to with Tony Hendra, the comedy writer, toward the end of the ’80s, when he was leading the collaborative writing of a book called The ’90s: A Look Back. I was invited to a session where we speculated about the near future of medicine and Tony riffed about what it would be like once they found a pill to care cancer. “Got a spot of cancer today?” he said, copyrighting. “No problem. Take Tumorout. You’ll feel as good as new. Go ahead. Light up that cigarette. Won’t hurt a bit.” I was disappointed that his cancer gag didn’t make it into the book. I’m also disappointed that they didn’t invent Tumorout.
Why am I even telling you about this? As I wrote in What Would Google Do?, I gained tremendous benefit sharing another ailment – heart arrhythmia – here on my blog. And so I have no doubt that by sharing this, I will get useful advice and warm support (and maybe a few weeks’ respite from trolls). I argue for the benefits of the public life. So I’d better live it.
I also hope to be one more guy to convince you men to get get your PSA checked: a small mitzvah in return for my luck. And when we talk about the cost of screening in the health-care debate, I’ll stand up to say that when you’re the 1-in-100, screening is worth it.
I’ve always been a cancerphobe; can’t imagine much worse than that creeping invasion. Yet I’ve surprised myself, staying calm in the face of realizing my fears, probably because I know it could be worse and, well, it is what it is. I’ve been using this amazing internet to do research and, with my wife’s help and counsel, make the complicated decision on a course of treatment.
Before doing my research, I’d assumed that the treatment Rudy Giuliani made famous – radioactive seeds – would be the way to go: simple, and if it doesn’t work, I thought, then I could resort to surgery. But it turns out that once you get zapped, it becomes very tricky to perform surgery. At my age – young, damnit – the wiser course is surgery, cutting out the prostate and, one hopes, all the disease with it.
I’m opting for robotic surgery – geek that I am, how could I not? My only fear is that they’ll wheel me into the O.R. and I’ll see that the machine is powered by Dell.
I’ve also chosen Sloan Kettering and Dr. Raul Parra to do the surgery. There’s one of the privileges of living in New York, among the best.
I’ll keep you informed as I find notes of interest while progressing toward surgery in mid-September and through recovery. Fear not, I’m not going to turn this into a disease journal: I don’t expect you to be consumed with my problems when others have theirs, far worse. Or perhaps you should fear, for instead, I will keep on writing about media wonkishness: about the rise of the next media and the fall of the last. Except now, I’ll be in a worse mood.
After I wrote the chapter in my book on Googlified insurance — thanks to the wisdom of the crowd in the comments here — I tried out the ideas on a couple of insurance executives. “You may be mad,” one of them emailed later, “but you had some good ideas.” Actually, my readers did.
I proposed a scenario in which the community of the insured gained responsibility for its own health, which would require insurance and medical companies to hand over control to them, to be fully transparent with data and information, and to provide services the community could use to improve its health and reduce its own costs.
Let me play out two implications of this with my own health situation. First, a case of cutting costs:
Because of my afib, I have to take Coumadin, a blood thinner. I am required to go to the medical group every 2-4 weeks for them to prick my finger and make sure the dosage is OK. In some people, it can be variable and volatile. Not in me. I’ve been on the same dosage with the same effect since I started. But they keep bugging me to come in. They yell at me.
When I get there, I’m offended at the waste of money. There’s a nurse who sits at a computer and judges my results and then types and types and prints out a sheet. There’s an assistant who does nothing but prick my finger and then marks up that printout. It takes them two people to do what my diabetic mother does many times a day on her own. They charge me a $20 copay each time I do this. I shudder to think what they charge the insurance company. It’s like watching a government bureaucracy in white coats.
My point: If my interests and those of my community and insurance company were aligned, I would put up a fuss and whistleblow this boondoggle. If I knew it could have an impact on my costs, I’d report this to the insurance company. If I knew my community had the power to do something about it, I’d tell my tale in a community forum and gather critical mass around imposing efficiency.
But my interests are not aligned with the insurance company’s. They are out to screw me. They think I’m out to screw them. The doctors who are screwing us think we’re all screwing them.
By the insurance company holding onto the power in this relationship, it screws itself. We have no interest in helping them. If, instead, they enabled the community and each of its members to take control of health and costs, if they acted as a true service to the community’s and its members’ needs, then they all would benefit — except perhaps for the unnecessary and now jobless assistant and the doctors who can no longer skim a profit on this scam.
Second example: I’m tussling with my cardiologist about the dosage of the drug I take that stops my fibrillation (the poetically named Rythmol). I’m on a high dosage but it’s working well (knock wood). The doctor says he wants me on a lower dosage, but the last time I tried I nearly went into afib and had too many palpitations (and I couldn’t concentrate under the pressure to get my book written). The risk of the drug is that even as it stops afib, it can cause afib. The risk of not taking the high dosage is that I can go into afib — and the more you get afib, the more afib you’re going to get. The risk, either way, is getting more cumulative bouts of afib. I’ve already had enough to make me a life-insurance risk, which is to say that the condition was not sufficiently managed early on when I got it (after 9/11/2001) and before I went on Rythmol.
[Note, as an aside, that my life insurance company is screwing me for a condition that I got from 9/11 and it's a company run by and for military people. I wonder how they treat Iraq veterans. More on that another day.]
There’s a health decision to be made here. It’s about balancing risks. The only way to make that decision is to look at as much clinical data as is available and judge that against the comparative risks and against my personal experience. The doctor will come to a conclusion based on his education and reading and a few minutes’ consideration in my case.
But the decision is properly mine. My health should be under my control. It is ultimately my responsibility. But the system is not set up for me to make that decision. It is not set up to inform me or give me control.
At Davos last year, I sat at a table with a bunch of doctors who complained about their patients going to the internet to get what they said was misinformation. They didn’t want the internet to get in the way. They wanted to remain in control. I told them they were looking at this the wrong way. Instead, I said, they should point their patients to what they though were the best resources.
Doctors, I said, should act as curators of information for patients. That’s not what doctors do. They don’t have the means or, they’d argue, the time. Insurance companies offer some information to patients, but it’s lite and not too valuable. (Did you know you should eat less? Not smoke? Exercise? No, really?)
If insurance companies and doctors tried to empower patients and their communities to take control of their health and the costs surrounding them, if they gave us information about both the medicine and the business of it, they might succeed. Right now, no one does.
I signed up for Google Health and immediately found it handy with news about each of my conditions. My wife wondered why anyone would use it and risk health data becoming public.
But my life is already an open blog and I’ve already talked about most of my conditions — mainly atrial fibrilation — and received benefit for it: support, links, resources, others’ experiences.
So why not talk publicly about our health? Fear. We fear losing a job or not getting insurance or, with certain conditions, being stigmatized. That is what we should address. With universal insurance and laws to prevent discrimination on health, we’d have no need to fear. Stigma, I can’t do much about.
There are other benefits accruing if we talk publicly. The more we share experience and create data, the more doctors can learn about our conditions and perhaps what causes them. The more we support each other, the more helpful it is for each of us (see Patients Like Me).
Do I trust Google with my health information? Do I trust you? The key is to make sure that I have control over my data. Just as with Facebook, control is the issue.
: Just as I finished writing this, I see that Fred Wilson agrees. Note that his father and I have shared our afib experience and I found it very helpful.
Well, the good news is that Starbucks got rid of transfats last week in New York and other markets. The bad news is that my beloved raspberry scone changed. That means that for the last year or so, I’ve been breakfasting on transfats. Last week, my cardiologist also scolded me for my bad cholesterol. I blame Starbucks.
But they do have a “reduced fat” (how reduced?) cinnamon chip mini loaf that’s pretty damned good. It’s probably loaded with heroin.
So there’s been radio silence because I thought the afib genie had returned to mess up my heart rhythm and I ended up trying to get somebody to give me an EKG so I could make sure. Most times, I know for certain but once in awhile, it can be hard to discern the neurotic set of palpitations from cardiac anarchy. Neither is terribly dangerous, but if it’s afib, you have to act within 24-48 hours or suffer through a month of turning your blood into weak tea. So I wanted to know quickly whether I was hitting on all cylinders. I went to my medical group’s urgent care facility last night but they were going to send me to the hospital, where I surely would have spent the night going through lots of fuss. So I called a new doctor I was planning to switch to and he was no nonsense: I went to his hospital this morning and if they found I was in afib, he would have plugged me into the wallsocket there and then. Turns out, I didn’t have afib; I was merely neurotic. And that’s good, if embarrassing, news.
But it all made me wish that I could give myself an EKG at home. And I went through Google and, lo and behold, there is such a device: $349 and you USB the data up. There are versions of this that track you all day long and the companies that do it charge thousands of dollars. But here is the Hospital 2.0 version. I wondered whether there was an open-source version. Sure enough: Here’s a homebrew EKG from Scientific American for $60. I can’t wait for the MAKE version with a car battery and tin can.
Dr. Helen (aka Mrs. Insta Pundit) is, unfortunately, a fellow member of the afib club. She responds to my post about my disabled month with some advice that, unsurprisingly, doesn’t have a bit of bleedingheartedness about it.
Rather than see yourself as selfish for having medical problems, my second tip is to use them to your advantage to get back at those you dislike. Case in point. A secretary at my daughter’s school had been impolite to me on the phone the week before. I went to pick up my daughter from school one day and this obnoxious secretary told me that my daughter was at the playground half a mile or so outside and I would have to go fetch her. I looked at her and smiled kindly, “I’m sorry, I am disabled after recent heart surgery and not able to walk that far.” She looked troubled at the word disabled (you know, all those ADA rules etc. have school personnel skiddish) and scurried down to the playground while I plopped myself in a chair and read a magazine in the air conditioned office until she came back with my child, apologizing for taking so long. You see, medical problems are not all bad.
: And it so happens, I’m slowed down again — not by afib this time but my clumsiness, with indirect afib complications.
Leaving a meeting with a colleague yesterday, I wasn’t looking where I was going and tripped going down a curb, falling face-first on the street. My left knee and right wrist took the brunt of it. Nothing broken, save pride. I rubbed the knee in the cab on the way to the airport and over a bad pizza there, I felt something growing on my knee that was almost twice the size of my kneecap. Because I’m on blood thinner due to my afib, my wack to the kneed caused a hematoma to well up and bruise into something pretty unattractive. Nice Continental employees in the lounge and the plane kept filling a bag with ice for me and I was damned glad I’d spent the extra money (my money, not the company’s) to buy biz class and we had larger-than-usual international seats that let me continue to ice the thing all the way home.
Just got back from the doctor and I’m ace-bandaged up and hobbling on a knee that won’t bend. He said I should use a cane.
: Which leads me back to Dr. Helen’s advice. Hmmmm. Well, if I did get that cane and walked with it the way Dr. House does on my wife’s favorite series, maybe she’ll think I’m just as brilliant and fascinating as he is….
Because of my heart’s fibrillation (an irregular heartbeat) and tachycardia (a rapid heartbeat), I spent the last month disabled: That is, in an instant, I became unable to do some things that were normal for me the day before. And then, in another instant, with a shock of electricity on Monday afternoon, I was able to do them again. But now I do those things with a slightly different perspective. I learned something in my disabled month.
I do most everything fast. I walk as fast as I talk as fast as I eat as fast as I type. But now I slowed down because if I overdid things by just a hair, the heart rate would go wacky. Walking up a slight hill on a Manhattan street — even walking against the wind — suddenly felt like a force field fighting me me.
It’s no big deal. It didn’t hurt. It wasn’t scary. Please stop yourself from leaving those nice, sympathetic comments — which I very much appreciate, but which I don’t need anymore, being normal again. I got around New York and London, too, during this episode. My only point here is that something changed: I was slowed down. And that changed other things.
While my heart was skipping, stuttering, and speeding, any staircase I faced grew before me like the road before Sisyphus. For a week, I couldn’t go up the stairs in my own home and rationed my trips and missed some work. Then I fired the doctor who wouldn’t give me the medication to control my heart rate. I got back on the right pill, a simple beta blocker, and then I was able to get up and out of the house. But still, when I faced stairs, I went up them slowly. I sometimes had to stop halfway up and, having conquered 20 steps, I would pull off to the side to recover.
I suspect I irritated the people stuck behind me on stairs — people in a rush, people like me, only days before.
I now stood on the right on escalators, rather than rushing up on the left. I now sought out elevators even for short, one-floor hauls. In the PATH station in New York, I stood there with old people, sick people, and mothers with baby carriages, waiting for a lift. I was embarrassed. I wondered whether they looked at me thinking, ‘What a lazy SOB: he looks fit and healthy and the excercise of a few stairs would be good for him: Get moving and don’t take up space on our elevator.’ Of course, it’s New York: Nobody really pays that much attention to anyone else. But I heard that echo in my head.
When I checked into my quaint hotel in London, built in seventeen-something, they were leading me, hauling my suitcase, up to two flights of stairs to my room — no elevator — and I had to beg off and beg for a ground-floor room. The clerk looked irritated. I might have been irritated at that, New Yorker that I am, if I had been in fighting fit. But instead, I felt embarrassed.
When I got on the plane coming home, they put me in an exit row and asked me the standard question: Are you able, etc.? I had to say, no, I’d rather not sit there just right now. I didn’t say I wasn’t able, though I wasn’t. I sensed another odd look: ‘What, you won’t rescue your fellow passengers, you selfish, first-class oaf?’ As we used to say in California, I was projecting. But that thought did flash through my head as I thought for a second about sitting there to avoid the embarrassment, though I realized that would have been irresponsible.
You all knew I was in afib, as we say in the club. It was rather self-indulgent to blog about it, for people go through far worse things than this. But I was glad I did, for I met other nice people who shared their help and experience, among them Tom Evslin’s brother, Bill, a doctor who’s a member of the club and who’s working now to find ways to survey fellow members to see what can be learned.
But I didn’t tell everyone I felt strange. I did talks and panel discussions and was fine. But as I blogged, when I did an appearance on Donny Deutsch’s show and got pissed at a professional prude and enemy of the First Amendment, my heart really went wacky fast and I thought for a second I might pass out on TV. Now that would have been embarrassing. Luckily, few would have seen it.
But now, I’m normal again. I bound up stairs, walk up on the left on escalators, rush by elevators, carry suitcases. But the contrast is so stark, it taught me a very small lesson about being disabled for a month: It wasn’t the heart rate that changed life, it was what I thought of myself that changed.
No, I’m not going to slow down and smell roses now; they make me sneeze and this wasn’t that big a life lesson. I’m not going to turn into a soft-hearted soul, even if my heart was soft; I’m still a snotty New Yorker and still a snarky blogger. No, I hope that I simply learned that the people in front of me are going at their own speed, probably for a reason. They’re not trying to get in my way as I rush past. I need to stay out of theirs. And I need to be grateful that I can rush past again. I need to appreciate normal.
Monday, I get shocked back into rhythm. Last night,, everywhere I looked, I saw electricity. I watched House on Fox and patients kept getting shocked and I thought, yow, did I lurch like that? I watched Boston Legal and a guy got arrested for electrocuting a guy. I’m getting secret message from my TV. But, no, the shock didn’t affect my brain. Not at all.
The prettiest music I know is the dull rhythm of a heart doing what it’s supposed to do. Beep. Beep. Beep. I am, as they say, converted, which sounds like and almost is a religious experience. And the only ill effect I know of is a very sore chest from ripping hairs out with the sticky pad that held the wires that ended my afib. The procedure itself took maybe 15 minutes and I’m back to being me. Except now I’m paranoid about every heart beat. But I’m grateful. Thanks to you all for your kind words and thoughts. Now we’ll see how long this lasts….
I’m going back to the hospital this afternoon for the second shot at getting shocked to get my afibbing, adlibbing heart back to the script. I’ll give you an update.
