Posts about health

For the diseased

I cannot possibly do better than Zeynep Tufekci in taking two journalists — New York Times columnist and former executive editor Bill Keller and his wife, Guardian writer Emma Keller — to school in a brilliant post that explains how each exploited and offended, misinterpreted and mistreated a mother who they think is doing too much and saying too much about her cancer. Please, please go read that now.

I will address only one matter myself: blogging and tweeting — or as we used to say, talking about — disease.

I will readily tell you about my prostate cancer and consequently malfunctioning penis, about my thyroid cancer, about the atrial fibrillation that came after I sucked in the dust of destruction at the World Trade Center, and while I’m at it, I might as well add a note about my bursitis.

I don’t do this because I am a hypochondriac or want an ounce of sympathy — I deserve none as I have had cancer lite, with no chemo, no radiation, only momentary pain or inconvenience, and most importantly, no mortal threat. I don’t do this to take part in what my elderly parents living in a community of elderly friends call “the organ recital.”

I do this because I gain support and information and because I can give others support and information. I do this because I believe we must talk about about sickness, openly and honestly, to rob it of its stigma, to pool what we know about it, to teach people about it, to influence policy about it.

And why shouldn’t we? It’s just disease. It happens to all of us, except those who come to violent ends. Imagine a world in which there is no stigma about illness, in which ailments are not a matter of privacy or lost insurance or jobs, in which we collectively share and learn as much as we can about what afflicts us so it can afflict fewer. It’s just data.

So I am astounded that two journalists who should support transparency as a virtue come to question the ethics of Lisa Adams for talking about her disease. It is her disease. It is her motives that matter, generously trying to educate people about her treatment. How dare a journalist of all people try to tell someone what she cannot say? How could a journalist seek less information in the world?

When I blogged about my prostate cancer, one and only one guy — who didn’t like me anyway — similarly complained that I was saying too much. He accused me of oversharing. I said the problem is not that. It’s that he was overlistening.

If Emma Keller doesn’t want to read about Lisa Adams’ cancer, then she shouldn’t read it. If Bill Keller thinks Adams should not treat her cancer and her pain, well, he should mind his own business.

But if they do want to act as journalists in this new age, then they must follow Tufekci’s advice and learn that when they read someone’s words, they are not interacting with media, they are interacting with a person. It so happens the person they were writing about is brave and generous. They were not.

And we all should be welcoming the opportunity to hear more voices, learn more perspectives, gain more information. And we should all be wishing Lisa Adams our best for what she is going through and what she is offering us.

Very public health

Watching the remarkable Xeni Jardin tweet her mammogram and cancer diagnosis, then blog eloquently about it, then crowdsource opening up her own MRI data makes me ask: Why are we so secretive about sickness and health? And what do we lose because we are?

The answers to the first questions are fairly obvious. First, we keep our sicknesses secret, we say, because we fear we could lose insurance. Except insurance companies force us to reveal our medical histories anyway. And let’s hope that Obamacare — may it survive the Supreme Court — succeeds in outlawing the denial of health coverage due to preexisting conditions. Next, we fear that we could lose jobs. Except in cases where a condition would affect job safety, shouldn’t employers be told that they cannot discriminate on the basis of health? Whether or not society chooses to address these issues through legislation, my point is that it’s possible to do so.

The other reason we keep sickness secret — the bigger reason — is stigma. We don’t want people to know we’re ill. But in this day and age, why should anyone be ashamed of being sick? To be clear, I am not saying that anyone should ever be forced to reveal health information. But why should our norms, stigmas, and economic considerations force us not to reveal it?

Imagine if we didn’t feel compelled to hide our illnesses. Imagine if we could be open about our health. What good could come of that?

We could learn more about correlations, which could yield information about causation and even cures. Given large data sets, we could find out that people who get a disease share common behaviors or characteristics. We might gain the opportunity to discover an environmental cause to a local outbreak of, say, breast cancer, enabling a community to fix the condition and prevent more cases.

Of course, I want to emphasize the conditional: correlation *could* help. One data point is never meaningful: That I’ve contracted one heart condition and two cancers since being at the World Trade Center on 9/11 is meaningless — unless there are many others in the same boat, and even then, one mustn’t jump to conclusions about causation. Still, more data is always better than less.

With openness about health, we could do a better job connecting people who share conditions to get information and support and each other. I am on the board of Learning Ally, formerly Recording for the Blind and Dyslexic, and at our last meeting, I was struck by the barriers that stigmas put in the way of young people getting the organization’s help. I heard how getting our software on iPods has helped more kids use the service because they no longer have to carry around a special device that marks them as different — stigma. I heard a mother say that school officials warned her that her child would be labeled — stigma — if she got him appropriate services, but she said she’d eagerly embrace the label if it got her son the help he needed.

On my blog, I’ve been in a debate about the recommendation by a government panel that men shouldn’t be given the blood test for prostate cancer anymore because, statistically, it hasn’t been shown to save lives. That’s because medical science can’t yet distinguish between fast- and slow-growing prostate cancer. I say men should get the test. I say we should be talking openly about our prostates as women have fought to talk about breast cancer. More information and communication is always better than less.

The real question is what men choose to do when they find out — through a biopsy following the blood test — that they have cancer. Perhaps more men should choose what the doctors call watchful waiting over surgery. But, you see, the problem is that we don’t have *enough* data to make a good decision. I want to know, based on the largest possible population, how long it took prostate cancer to spread after it was found. Then I could decide how long to watch and wait. But I don’t have that information. So I chose to get the cancer out of me. I could make that choice only because I had the test. I had my own data. If I had the data of millions more men, I could make wiser decisions.

How could get get more data?

Step one is to encourage men to talk about their prostates — and, yes, sorry, their penises — so we disarm the stigma about it and get more men to be aware and get tested and share their experience.

Step two is to create the means to open up and share as much health information as possible so researchers, doctors, and hackers can dig into it and find correlations and patterns and questions worth pursuing, perhaps leading to answers.

When I talk about the principles of an open society in Public Parts, this is what I mean. Rather than reflexively declaring that sharing information about ourselves — our bodies as well as our thoughts and actions — is dangerous, we must stand back and ask what benefit could come from such data, now that we have better technological means to open it up, gather it, and analyze it.

Only then can we balance the benefits and risks and decide, as a society, how open we want to be, how open we should and need to be — and why. That is the kind of discussion about privacy and our changing norms I’d like to hear. Let’s not just talk about what can go wrong now but also what could go right.

: LATER: Some added links:
* Larry Smarr quantifying his own health.
* On being a medical data donor.
* Give us access to our own health data, online.

Back to the knife

They’re very nice there, but I really need to stop hanging out at Memorial Sloan Kettering. I’m headed back Friday to get the remaining half of my thyroid out.

The biopsies show no cancer but the nodules growing in my thyroid could turn bad, so they say it has to come out. The first half came out about a decade ago. I asked them then why they didn’t just take it all out, since the medication I take obsoletes my thyroid anyway. Risk to the voice, they said. Oh, joy.

When I get laryngitis, that’s a straight line: Oh, many will celebrate Jarvis losing his voice. Now it’s rather sobering, as I make my living teaching and talking. Look at it this way: What’s worse for someone in my position–damaging my potency or my voice? That puts my last operation at Sloan Kettering in perspective.

I haven’t given you a progress report on my prostate recovery in awhile. That’s because there’s not much new, fortunately and unfortunately. But since I said I’d be open about these things, I’ll give you an update soon.

This surgery is no big deal; I know since I’ve had it before. It’ll hurt like a beast to swallow for a few days. For a few weeks, I’ll look like I had my throat slashed, unsuccessfully. And then I’ll be my usual ornery self, I hope. If all goes well, I plan to be growling on This Week in Google next week, as usual.

The public life

The Guardian asked me to write a column about the transparent life and my writing about my prostate cancer. Here it is:

* * *

In the company of nudists, no one is naked and there is nowhere to hide. In this space and on my blog, I have been arguing that with the internet, we are entering an age of publicness when we need to live, do business and govern in the open. So I was left with little choice when I learned I had prostate cancer. I had to blog it.

So far, no regrets. Oh, one troll tweeted that in my blog post, I had merely used my cancer to plug my book (which, by the way, is entitled What Would Google Do?). But my Twitter friends beat him up on my behalf. I got emails pushing nutty cures on me – yes, there is cancer spam – but Gmail’s filters killed them for me. And I have had to be mindful not to bring my family into my glass house; my transparency shouldn’t necessarily be theirs.

But it has all been good. On my blog, on others’, in Twitter, and in email, I received an instant and lasting shower of good wishes and some good advice about my choice of surgery. My brothers in malignancy have shared their experiences with generous candour. I even inspired a few of them to blog their own stories. They joined me in urging men to have the PSA blood test that revealed my cancer.

After my blog post sharing the diagnosis was republished last week in the Guardian, I heard from Emma Halls, chairman of the UK Prostate Cancer Research Foundation, who said the disease affects almost as many men as breast cancer does women, but it gets less funding and little attention.

That stands to reason. We men don’t like talking about penises – certainly not when they malfunction. Discussing one’s incontinence and impotence post-surgery – both temporary, we hope – well, it doesn’t get much more transparent than that. It’s one matter for me to disclose my business relationships, politics, religion, and stock ownership on my blog’s “about” page; it’s another to do this.

So I think I’ve become about as transparent as a man can. I am living the public life. There are dangers here. I risk becoming merely a medical and emotional exhibitionist. And I know I have violated my own privacy to an extreme.

But I think we need to shift the discussion in this era of openness from the dangers to privacy to the benefits of publicness. It’s not privacy that concerns me, but control. I must have the right and means to keep my disease secret if I choose.

By revealing my cancer, I realise benefits, and so can society: if one man’s story motivates just one more who has the disease to get tested and discover it, then it is worth the price of embarrassment. If many people who have a condition can now share information about their lifestyles and experience, then perhaps the sum of their data can add up to new medical knowledge. I predict a day when to keep such information private will be seen by society as being selfish.

Collectively, we will use the internet’s ability to gather, share and analyse what we know to build greater value than we could on our own. That is the principle of transparency that I want companies and governments to heed: that openness in their information and actions must become their default, that holding secrets only breeds mistrust and robs them and us of the value that comes from sharing.

I believe this openness at the source will become a critical element in a new, linked ecosystem of news, as institutions and individuals will be expected to provide maximal information on the web. Such open intelligence also allows an unlimited number of watchdogs on those in power, helping to bring about a new, collaborative – and ultimately, I hope, more effective and efficient – system of journalism.

So for me, transparency is a necessary ethic of the age. That is why I used my medium, my blog, to share my prostate cancer. If I believe in the value of publicness, how could I not?

The small c: Stern & Imus

I just did an interview about my cancer with Steve Langford from Howard 100 News, who really is an intrepid reporter. I told him I could certainly not describe the full details of going through this with other media outlets (not that a single one of them would care) because it’s just too, well, explicit. So, of course, Steve then demanded those dirty details, starting with the harpoon shots into me that I blogged about yesterday (hint: it’s a rear-guard action). I still spared Steve the atmospherics of my MRI with a foot-long magnetic coil also shoved up there. Some things are too much even for Stern fans. And I’ll tell you the Viagra story later.

When Steve mentioned my blog post today on the air, he said, Howard expressed his concern and I’m grateful for that. Yesterday, I wrote about living the public life and no one has perfected that better than Howard. He – more than blogs – has taught me about transparency.

One of the things I am valuing most in the phenomenal response I’ve been getting since yesterday – besides, of course, the wonderful good wishes from so many of you – is the candor I get from folks who’ve had this experience. One friend sent me email with frank advice about sex; it takes guts to talk about that with others and so I’m grateful he was willing to. A few others have let me know how they pee (thanks, guys).

I told Langford that I wanted to get advice from Stern producer Gary Dell’Abate because, on the show, he very publicly went through the ordeal of having a stent stuck up his penis because of kidney stones. Because he’s already shared every detail on the radio, I figured he’d be straight with me. Get this: Gary called me to assure me that it was irritating but didn’t hurt; getting it taken out was incredibly strange, though. He didn’t hesitate to share with me because he already lives so much in public.

Living in public is good.

But there are exceptions. Don Imus may be one of them.

I had joked that one of the worst parts of getting prostate cancer is that I share an ailment with Don Imus when I’m a Stern fan.

But, hey, now that we’re brothers in malignancy, I at least wondered what treatment Imus had selected from the menu – radiation, radioactive seeds, surgery, robotic surgery, or just watching – so I searched online before Langford called (then maybe I could have him speculate on Imus’ impotence and incontinence rather than mine).

I was shocked to find that Imus is apparently talking about treating his cancer with peppers. Peppers. By this logic, people in Mexico, China, Thailand, and Hungary should never get cancer because they eat so many peppers. Yeah, science spends billions looking for the cure for cancer and I trust Imus to find it?

Indeed, a 2006 study found that an ingredient in certain peppers has been found to inhibit the growth of prostate cancer cells. But it has not been tested in humans. Lycopene, an ingredient in tomatoes, also helps reduce PSA. But I’m not going on the ketchup cure.

If Imus is seriously – and so publicly – spreading the notion that eating peppers will cure him, I fear it could jeopardize people who think that they can avoid diagnosis and treatment for a deadly – but curable – disease. Because he is on the radio, what he says gets used and spread (I hesitate to link to the guy promulgating this pepper thing but here it is).

I’m going to tell jokes about my cancer, as best I can, and share my experience when I think it might be of interest. I don’t intend to drown you in sorrow and seriousness. But take this advice seriously: Don’t take medical advice from a talk show host – or a blogger – just because they have a platform to spread it. The virtue of publicness has its limits.

The small c and me

I have cancer, prostate cancer.

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.

Health-insurance stagnation

America’s health care system – or lack of one – leads to a stifling of economic innovation and mobility. Consider:

* Daniel Taghioff argues that people are more likely to risk starting new enterprises – leading to economic growth – in countries that have health safety nets.

Turning to entrepreneurialism – would you rather risk all to start a new business in a place like the US where if you lose everything you may end up, literally, with nothing, no health-care, no decent schooling for your kids and so on? Or would you choose a society where, if all else fails, the state (or strong social networks) will take care of you? . . . The list of countries with the most new businesses per capita is full of small to medium sized countries with strong social safety nets, or small Asian countries with very high levels of social cohesion.

* I know I didn’t quit my job until I had new health care insurance lined up, for without an employer, I wouldn’t have gotten any (and in the interim had to pay $24,000 per year in COBRA). How many people are sticking with jobs, unhappily and thus probably unproductively, just because of insurance handcuffs? What if they were freed? It would be better for them and their employers.

* General Motors was brought down by more than its its health insurance obligations. Nonetheless, those obligations weighed heavily on the company as they do on many other companies with long legacies and large staffs.

* I was at a WEF event yesterday at which one of the wise counsels pointed to the exacerbation of the health-care crisis that is coming with so many Americans unemployed. This, I think, will force the political issue.

Rather than spending billions to bail out and now even buy crumbling legacy industries and crooked banks, how much more value would universal health insurance give to the economy?

What if, instead of bailing out the past and filling potholes, the government assured universal broadband access? What would that do to spur innovation and entrepreneurship and begin to reform education, which, in turn, would spur innovation? What if education were reformed to emphasis innovation over test-taking? What if investment in new companies were a high priority of the tax code?

We are not thinking strategically enough about these issues in the political debate. We complain about companies thinking short-term but so does the nation.

Dr. Wow

Thanks to links to the post below on medicine as information, I heard from Dr. Jay Parkinson, who is starting an incredible company and platform called HelloHealth to reform the relationship between doctor and patient around (a) the patient and (b) conversation. I’ll let him tell you about it (from Poptech):


Jay Parkinson at Pop!Tech from Jay Parkinson on Vimeo.

As the man says at the end, it’s enough to make you wish you lived in Brooklyn to take advantage of the service. I don’t want to jinx myself, but I almost want to get sniffles to try it out.