Posts about thyroid

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.

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.

Cancer, the sequel

January 21, 2011 by Jeff Jarvis
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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

January 4, 2011 by Jeff Jarvis
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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.