Posts about cancer

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.

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.

The small c and the big robot

September 17, 2009 by Jeff Jarvis
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Few of you should care but for those who do, here’s a chronicle of my experience in robotic surgery for prostate cancer. I post it here mainly for the ongoing Google value to those who follow me into the O.R.

da-vinci-robotAt 9a Monday, I walked into the bright operating room at Sloan Kettering and faced the robot. Pictures of it on the manufacturer’s web site make it look small, like something that might screw in radio knobs on a Cooper Mini: friendly. In person, the robot is huge, like something Sigourney Weaver would defeat in space: imposing. I saluted it and backed away. Its arms stood at ease, each covered in plastic to maintain its sterility. I also saluted the surgeon, Dr. Raul Parra, who works many feet away at a console that gives him a video view inside me – much magnified – and delicate control of the five arms poking inside my belly. They also pump me up with CO2 to give the robot room to work and the doctor room to see. One friend made reference to me becoming a Macy’s Thanksgiving Day Parade balloon and envisioned shooting me down over Broadway.

The waiting-room nurse told my wife that they put patients under anesthesia an hour before surgery begins because that’s how long it takes to set up the robot and patients tended to get a little freaked seeing an alien beast assembled over them, ready to drill in. It’s one matter to be scared of needles, another to stare at a robotic arm with electric scissors on the end.

While he’s inside, the surgeon tries to peel back and preserve the nerves that encase the prostate because they’re the ones that enable erections. In some proportion of cases, the patients get that magic talent back; in some cases, not. That’s why doctors now prescribe Viagra before and after (“use it or lose it,” another doctor said to me – a new answer to, “not tonight, dear, I have a headache”). The surgeon takes out the seminal vesicles, which means that orgasms, when and if they return, are no longer messy. Out go a few lymph nodes. And, of course, out goes the prostate and a piece of the urethra with it. That’s why men also have problems with continence. “We have to re-potty-train you,” said my doctor’s nurse.

After surgery, the doctor said my cancer appeared to be contained to the prostate. That’s the key question. If it is, then my PSA – which was rising and led to the discovery of my cancer – should fall to nil. If it isn’t contained, then the cancer can spread to the bones (that’s what killed my grandfather) and then treatment could include radiation and hormones (to cut off the testosterone that feeds prostate cancer).

When I woke up in full morphine-induced stupidity, I had five small holes in me – the largest just big enough to bring out the prostate – and two drains, one in my side (which was taken out before I left the hospital – a very eerie experience, having a foot-long french drain pulled out of your belly), the other where I had been dreading it. When I scheduled surgery, the nurse volunteered to show me a Foley catheter. I declined. Funny, she said, everybody does. In my mind’s eye, I saw a thin stick up my dick and that was bad enough. But I woke up to find a garden hose coming out of my penis (the subject of one of my earliest tweets once I got my iPhone and lucidity back). As the Howard Stern Show’s Gary Dell’Abate told me about his stent up there, the problem isn’t so much pain as feeling things move where they shouldn’t.

I wrote a Guardian column about choosing to reveal my cancer on my blog and the benefits that come from it. There’s no greater symbol of giving up privacy and embracing publicness, I think, than writing about one’s penis, especially when it malfunctions. But in the hospital, I lost every last vestige of modesty. There’s just no point. Nurses need to fix things there and give instruction on how to cope with the catheter and you are completely, utterly exposed. There’s a young, female nurse, speaking at eye-level to my penis telling me what to do with it as it sits in extreme repose. Think Seinfeld’s shrinkage episode; cold water and catheters have the same effect. By Tuesday, my last bit of third-grade immaturity about the subject of penises died.

Now I have to manage my catheter. Warning: appetite spoiler coming. As my wife said to the kids, “Daddy’s going to be disgusting for a few days.” I have to empty and change a bag strapped to my leg during the day and a bigger one that hangs by my bed at night (but it’s not big enough to get me through the night and let me tell you, you don’t want this thing to back up). As with all challenges, once you’ve faced it, it’s not as daunting as the dread.

My pain isn’t awful, either. I have enough Vicodin to keep Artie Lange or House happy for a month but so far I haven’t used any, just one sleeping pill to date. It hurts my stomach to stand up and lie down – and, gawd, you don’t want to burp or cough and I don’t want to know about sneezes – but that’s momentary. It’s really not bad.

If I had chosen radiation instead of surgery, I would not be dealing with problems of plumbing malfunctions now, but there’s a chance those could come in a few years. And it’s also not possible to be assured that the cancer is gone. There’d be more hanging over my head. So at my age, I’m still glad I chose this course: out, out, damned spot.

I’m well aware how lucky I am. Prostate cancer can be cured; the treatment has its inconveniences but nothing next to so many other forms of the disease. Mine was caught early but my timing was good insofar as robots had been invented and perfected. My unit at Sloan Kettering was filled with nothing but prostate cancer cases like mine. My wife sat in the lobby and saw parents wheeling in a child’s dolls and books for a long stay. That’s what makes the place break your heart. My inconveniences are easily put into perspective.

As I finish this post, it’s Thursday afternoon. I’ve slept through the night, avoided most plumbing disasters, just took a mile walk (at a crawl’s pace), am eating well, and have even had a first glass of wine. I’m probably doing better than I thought I would. One friend took over my class this week and another will next week, but in a fit of optimism, I hope to have my hose-ectomy on Wednesday morning and then go into the city for school that afternoon. We’ll see. In any case, it’s good to have cause for optimism.

I’ll continue to update you on my condition, as warranted.

The small c: Stern & Imus

August 11, 2009 by Jeff Jarvis
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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.