Posts about prostate

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.

Calling Dr. Google

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

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

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

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.

Cancer, the sequel

I’m either a two-time loser or a two-time winner, depending on how I fill my glass.

I have cancer again, this time in the thyroid (last time in the prostate). I had half of my thyroid taken out in 2002; it had no cancer. The second half was just excised (I’m running out of spare body parts). Just got the pathology report. Unfortunately, it did not include the most beautiful word in the English language: “benign.”

But it did include what may be the second-most comforting word: “contained.” My Sloan-Kettering surgeon said that because the tumor was small and contained, he’s not going to move to the next common step in treatment: radioactive iodine. He’ll watch it with sonograms and if something does grow back, I’ll be glowing in the dark. So now, every six months, we’ll track my two cancers, hoping for no reruns.

I debated whether to blog about this, just because at some point, you needn’t care about my ailments and I am wary of sounding like I live in the old folks’ home (you know the joke all your grandparents have told: time for the organ recital). I’m also quite aware — especially after seeing my fellow patients in the hospital — that I have cancer lite; beside my roommate, who had Steve Jobs’ reported first operation, the ominous Whipple procedure, I have a paper cut.

I believe in sharing if there’s something to be accomplished with it. So I come back to that word: “contained.” In both these cases, my cancer was contained because, thank goodness and modern medicine, it was caught early.

So that’s the moral to this story: Go see your damned doctor if you haven’t recently. My thyroid got swollen the first time around and that’s what led to surgery and then monitoring. My doctor testing my PSA caught my prostate cancer. I’m overdue with a colonoscopy — and sure as hell do not want a hat trick. But I will go as soon as I can. You should, too.

Before my thyroid surgery, I told you that there was a risk of damage to my voice. My foes will be sorry to know that I am still in full voice (and temper). The last time I had the operation — it’s rare that one can perform consumer comparisons — my throat hurt like hell for more than a week but this time not. There are two more splashes in the glass, over the half mark.

I’m blessed that the cancers were caught and contained. It’s creepy knowing that some leftover rogue cells could come back and wondering whether other brands of the disease are building elsewhere. Yesterday at a conference on privacy, someone used that word to describe online tracking and sharing: “creepy.” Ad targeting is not creepy. Cancer is. But I keep reminding myself where my glass is.

I’ll give you an update about my prostate another day.

I appreciate every time you, my friends, wish me well. But I’m not fishing for that so you needn’t. Instead, please go see your doc. It’s check-up time.

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.

@sternshow: penises

I finally get into Howard Stern’s studio for the first time and what do we talk about? What else? Small penises. How appropriate.

I was headed in yesterday morning to talk about Lotus Notes vs. Google with Howard’s tech guru, IBM’s Jeff Schick, and get a tour of the studio and its operation. Then Howard invited us in, on the air. We talked geek stuff for a few minutes (more on that later) when Howard asked what I was up to next. I came prepared. I said I was working on a possible book about publicness (new idea) and wanted to talk to him about it. Ask what you have to ask on the air, Howard said. So I asked him whether he had regrets about his public life and about his view that people are better off public. He said he thought his listeners were better off because he was willing to talk about anything, even masturbation and lesbians.

I told Howard that he had cleared the way for me to — even inspired me to — talk about my prostate cancer in public. Howard, of course, cut to the blunt question: “Are you getting it up now?” Answer: no.

We talked about the gory, intimate details of prostate cancer: the strange, “internal” orgasms; the harpoons up the ass for biopsies; the garden hose out of the dick after surgery. The cast groaned at each of these. “You fucking shut me up,” Howard said. I fear I was discouraging men from getting tested when I meant to do the opposite. And Howard acknowledged, as hard as it was, that he, too, would have opted to get the cancer out. Hell, he can’t stand sniffing brass polish on his condo door without thinking he’s getting cancer.

I wish I were funnier and more fun. Over the years, I’ve called into the show about the First Amendment and the FCC, about gadgets and geek stuff, and now about cancer. What a ball of fun I am. Good thing we didn’t talk 9/11.

It was great fun visiting the show. On the air, as a guest, I stood right inside the door, by a wall behind the couch, with a headset and mic on. To my right was Fred and I was delighted the first time he played a sound effect to back up what I was saying. I got Fredded! To my left was Jeff Schick and behind him, behind glass, Robin. Howard sat three-quarters of the way across the studio — quite a distance — in his command center, looking a little gaunt (too much exercise, I’d say), and beyond him was the Wheel of Sex and the Gary puppet and all that.

As soon as the show went to break, folks walked into the studio, Howard chatted a bit, and I left him to his work. Outside the studio. Steve Langford of Howard 100 News held his mic in front of me sucking quotes out with his puppy-dog silences. They take video. They get releases.

And then Jeff and I toured, meeting Scott the Engineer, Sal and RIchard (so polite), the Howard TV folks, and more. The amazingly nice Gary Dell’Abate and I talked gadgets. What impresses me is just how nice these folks are. Makes you want to work there, even with the ball-busting.

LATER: Howard talked about prostate cancer again this morning after having obsessed on it last night: “I was so upset for him. And then of course, it turned to me and I have cancer…. Seems to me that doctors ought to sit down and figure out how to remove prostate cancer without removing a guy’s boner…. Every male on the planet should be donating money to prostate cancer research….

“I just had a bad day with that. Every day seems like a bad day to me because everything drives me nuts.”