BuzzMachine

The media pundit's pundit. Written by NYC insider Jeff Jarvis, BuzzMachine covers news, media, journalism, and politics.

Tag: health

  • Back from a brink

    4 comments on Back from a brink
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    I’m back. Here’s where I’ve been. Most of you should not care, but for those wanting a medical update, here’s the tale. 

    Two weeks ago, on Sunday, Jan. 11, I lost a test of strength with bedding on laundry day. As I’ve already recounted, My feet flew out from under me; I flew up and fell hard on my back. That Thursday, I went to urgent care (yes, should have gone sooner), where a CT scan revealed a compression fracture to my L3 vertebrae.

    I was in pain but felt it was in control, so I (stupidly) refused pain meds. After all, I”d driven myself to my teeth cleaning and to a board meeting; I got around. 

    But the next day, the pain got worse, drastically, unbearably worse. I started feeling crappy overall and lost my appetite. That Saturday, I simply could not get out of bed. I couldn’t even move myself away from its edge. In the dark, I fell out of bed with another thud.

    Sunday morning, as snow fell, EMTs lugged me downstairs to the ambulance and Morristown Hospital. Because the drastic increase in back pain and the fever were coincident, the first hypothesis was that I had a spinal infection. The spinal specialist said he’d never seen such a thing. An MRI, a CT scan, and an X-ray backed him up.

    Meanwhile, the infectious disease doctor ordered a huge battery of tests and a blood culture. He put me on aggressive, IV antibiotics, dripping from my personal Festivus pole. Two mornings later, the doctor came into my room, excitedly announcing, “It’s growing! It’s growing!” Strep bacteria were growing in the cultures. He knew what to treat.

    Then, out of nowhere, my recurrent atrial fibrillation emerged with tachycardia — a very rapid heart beat at 133 — and low blood pressure (90/50 vs my usual 120/70). My oxygen was consequently low. After pumping me full of more fluids, that resolved.

    An echo-cardiogram thankfully revealed no growth of the bacteria in my heart, but to be sure I’ll undergo another — a TEE or transesophageal echocardiogram, its wand stuck down my throat — for a closer examination later this week.

    It’s likely, the doctors believe, that I got the blood infection from my dental cleaning. Happens. Years ago, folks like me with tricky heart valves had to take antibiotics before the procedure, but that standard was changed long ago. I’ll take them now.

    It appears that the fall and the infection have nothing to do with each other, though we’re still baffled at how the latter coincided with much worse pain in the former. In any case, as serendipity, fate, or grace would have it, my fall — painful as it is — likely brought me to the hospital much sooner than my fever and appetite would have. I was a short walk away from sepsis: the infection spreading to organs, shutting them down in turn. The infection was treated sooner and more decisively because my back pain brought me in.

    I’m trying to get back to work. The proofreading of my book is due now. I’m headquartered on a pile of pillows on the bed, forcing myself up with a cane, in a back brace. Every day, I now infuse IV antibiotics through a PICC-line, a 19-inch hose now installed from my right arm up to under my collar bone. I’ll do that for five weeks, with a kind nurse visiting to change the dressing and take blood draws once a week.

    Before I left the hospital, a phlebotomist came to start another blood culture, pouring my precious humours into two little bottles that, to me, looked like hot sauce. He said most folks think they look like tiny booze bottles. Right. On second thought, this was a personal bloody Mary: Bloody Jeff.

    Moments ago, my wife looked up the latest lab results and the great news is that now germs are *not* growing in my blood cocktail. Science and medicine are working.

    I’m so grateful to the doctors, nurses, and staff at Morristown. To hell with you and the ignorance you stand for, RFK Jr.

    And I could not be more grateful to my wife, who already does everything and now is caring for my every pathetic need, with our daughter’s help. (Our son is way up in New Hampshire.)

    All this has meant canceling my scheduled cataract surgeries. Next I’ll have cardiac ablation to try to rid me of AFib. Age. 

  • For the diseased

    7 comments on For the diseased
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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.

  • Very public health

    16 comments on Very public health
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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.

  • Back to the knife

    54 comments on Back to the knife
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    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

    18 comments on The public life
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    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?