Posts about prostate

Small c update: The hosectomy

It has been a week and a half since my prostate surgery and I’m doing great. I’m walking a couple miles a day (can’t run for a few weeks but even when I do run it’s not running), eating normally, sleeping well, now able to sit and stand and cough and burp without feeling as if I was hit in the belly with a Volkswagen.

I just returned from my hosectomy: the last dread. After everything else one goes through, this is the least of it. But I am damned glad I didn’t know just how long a Foley catheter is; I’m surprised I didn’t choke on it. The nurse fills the bladder with saline, then deflates a balloon also filled with saline (which is what keeps it in), then pulls, and then it’s my job to catch what comes out in a jug. “Just don’t get my shoes wet,” she says, “they’re expensive.” Mission successful. An hour later, I just went to the bathroom for real. Mission successful. Life is good.

But it turns out my pharmacist was wrong: I will be wearing man diapers for a few weeks along with a man pad inside – the belt and suspenders of the urologic trade. I feel as if I’m walking around with a padded codpiece – which is ironic, considering what’s still not going to be happening for awhile in that department.

They tell me it’s going to be a difficult few weeks and then it will start getting better over the next few months. That’s why I’ve canceled trips – that and I am still recuperating. The one thing I heard from people who’ve had my same robotic surgery is that you feel too good and then push it and then regret it. Today’s a case in point: I was determined to go into Manhattan for my class but my wife and my substitute, Steven Johnson, convinced me I was wrong.

Bottom line: The new normal is looking more like the old normal every day. I remain very lucky.

The small c and the big robot

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.

Small c: drugstore embarrassments

As I prepare to go under the robot on Monday, I’ve found that the process includes drugstore embarrassments. They’ve only just begun.

It starts with Viagra. As I’ve explained, a man’s plumbing doesn’t do the two things it’s supposed to do for at least some time after the prostate is taken out. In the hope of fixing one of those functions, doctors now prescribe low-dose Viagra even before the operation.

So I had to go to the drugstore and buy the little blue pills. But I don’t need them, I wanted to announce. Medical reasons. Really.

The doctor had prescribed 10 of the little blues but the pharmacy gave me only six. That’s evidently as much whoopee as my insurance company will pay for. But this isn’t for whoopee, I told the pharmacist; it’s for cancer. No matter. I could buy the extra pills for almost $20 each. Jeesh. In my day, erections were free. No more.

A few days ago, I sucked it up and dealt with the other missing function. I went to the drugstore’s incontinence aisle – yes, it’s a market niche – and took a pack of pads and another of full-size, pull-up, absorbent underwear to find out what I’ll need. Thank goodness at least that the guy behind the counter was a guy, I thought. So I asked him. He turned around to the two women pharmacists behind the counter and said to the cuter one, in front of everyone: “Does he need the underwear?” He might as well have gotten on the mic and asked for a price check for pull-ups for the guy who’s peeing in his pants. Jeesh.

But the pharmacist was nice. “You won’t need the diapers,” she said. Good news. Except why did she have to call them diapers?

Four more days.

The public life

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?

The small c: Stern & Imus

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.