Posts about prostate

For the diseased

January 14, 2014 by Jeff Jarvis
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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.

Calling Dr. Google

June 28, 2012 by Jeff Jarvis
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I should have listened to Dr. Google. I woke up Sunday morning with the dregs of a cold so I went back to sleep. An hour later, I woke up with a new pain on my right side about an inch down and three inches over from the navel. Given who I am — chronic hypochondriac and a certified Google fan boy — I searched Google for appendicitis.

By reputation, Google — and the internet — should have returned bogus, dangerous, uninformed, unauthoritative advice from cults, and witch doctors, and Demand Media. But it didn’t. It gave me the NIH, WedMD, the Mayo Clinic, (yes) Wikipedia, and other good and trustworthy sources. It gave me more than enough good information to check and cross-check and then diagnose my new pain correctly.

But I didn’t listen. First, I really am a hypochondriac. More than once, I’ve thought I had appendicitis, forgetting that it can’t occur on the left side. And even I am struck by the absurdity of my recent medical history, all documented here: atrial fibrillation, prostate cancer, thyroid cancer; surely, lightening is bored with me. I further had listened to those — including doctors and nurses — who pooh-pooh listening to Google. So I thought it prudent to wait and see whether this got worse, as I assumed appendicitis would, or turned into something else or nothing — in which case, I wouldn’t be embarrassed with a diagnosis by Dr. Google.

All day, the pain advanced. I repeat: This was a new, a unique pain to me. At 530pm, my wife and I went to a cocktail party at a friend’s house that I’d been looking forward to. Fifteen minutes and one sip in, I knew I was in the wrong place, ready to succumb to hot flashes and God knows what else. I went home and drove to the hospital.

I think I can pinpoint the exact moment my appendix burst: at 730pm when I was going through the process of insurance, an even greater pain swept through me. In the emergency room, I was given pain medication, thank goodness, and tests, including, at some length, a CT scan. The scan eventually came back saying that I not only had a bloated appendix but also that it was “perforated.” Now if they were sure the appendix had burst, the normal course, I was told, would have been to send me home with IV antibiotics for two weeks to clean up the sure infection that was just starting in my gut; then I’d return and they’d deal with it.

Luckily, very luckily, I had a hot dog doc who doubted the extent of the oozage, given the freshness of my pain that morning, and so he decided to operate. At 2am, he started. He did, indeed find gunk in my belly and had to spend extra time flushing and vacuuming it up through three small holes in my belly — one in the navel — for his arthroscopic instruments (two fewer than were needed for my robotic prostate operation). I was minus yet another body part — I need some more spares! — and lucky for it. Tuesday afternoon, after much IV antibiotics and pain meds, I went home.

Now here’s the moral to the story: If I had gone straight to the emergency room at 10 that morning or anytime that afternoon, I’ll bet my appendix wouldn’t have burst and I would not have had the extra risk and trauma and uncertainty.

I should have listened to Dr. Google. All the good Doc did was send me to good docs — not junk sources; note well that it’s in Google’s interest to give us quality and that is why its search algorithm has been changing for our benefit (there is no such thing as neutral search and I don’t want it if anyone ever invents it). It gave me the information I needed to make an important decision and tell the doctors what they needed to know to make a diagnosis.

I — of all people — should not have doubted Dr. Google’s healing power. Sorry, Doc.

Very public health

December 30, 2011 by Jeff Jarvis
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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.

Cancer comedy

October 1, 2011 by Jeff Jarvis
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I wasn’t sure I could watch 50/50, but I’m glad I did … just as I wasn’t sure I could watch The Big C, but I’m glad I get to see that, too.

I’ve merely had cancer lite (twice: prostate and thyroid). Not having had to go through the horrors most cancer patients endure — chemo and radiation and clocks with 30-minute hours — all I can really speak to is the realized fear of it. I’ve long dreaded cancer, then I met my dread. Even though I tell my own jokes about it (want a limp dick joke? or a throat-slitting gag? I gotta ton of them), I didn’t know that I’d find others’ humor in it.

But I did. Each in its own way, the movie and the show take the muffler off of cancer: the hushed tones, the embarrassed awkwardness, the unmentionableness of it. They don’t exploit their tumors for cheap laughs. They don’t find nobility in metastasis. They don’t jerk tears. They simply have the courage to treat cancer for what it is: just another fucking disease.

50/50 is just a bromance with not only bad girlfriends and crazy mothers but also tumors and rude doctors getting in the way of getting drunk and laid. The Big C is darker. Laura Linney’s family is a sitcom family bizarre enough for cable. If these were shitty shows, cancer wouldn’t rescue them. But they’re each good. Yes, all the characters end up learning more about the meaning of life. But they did that, too, on Leave it to Beaver. That’s the point. It’s just life. And death.

Free Public Parts excerpt

September 26, 2011 by Jeff Jarvis
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Here’s another free excerpt from Public Parts — a day before its formal release in print, e-book, and audio tomorrow. This audio excerpt comes after the earlier piece about the Germans and privacy and it’s about my own publicness and privacy. Warning: penis ahead.

One more free excerpt — the introduction — is here.