streaming consciousness…

PROSTATES & POLITICS… and 2012 in the rear-view mirror…

Dec. 29, 2011, approximately 4:30 p.m:

 “You tested positive for prostate cancer.”

            I tried to remember the old Seinfeld episode, but couldn’t remember the ending, so I was still positive (pun).  “That means I don’t have it, right?”

            The doctor smiles thinly.  “Next we’ll need to do a bone scan to see the extent of spread.  After that you can meet with the oncologist…”

            The words gradually sank in.  “Wait a minute; you mean I’ve got cancer (heavy on the reverb)?”

The doctor nodded, then continued talking, but I was no longer listening.

The say at the moment of your impending death your life will pass before your eyes, presumably in fast-motion if you’ve done very much, though anybody who’s ever used an old-fashioned crank-up 16mm film camera knows it’s just the opposite: to play back fast, you shoot slow, and vice versa. Think about it.  But I didn’t see any flashbacks, either fast or slow. All I saw were dollar signs, flashing before my eyes and out the window.  My life itself was like a frame of old-fashioned film stuck in an old-fashioned projector gate, starting to burn and tear, starting to smell to all Hell.  I’d just been told that I’m dying, the dreaded ‘C’ word.  But wait a minute.  Aren’t we all dying?  It’s just a question of when, and how…

So in my mind I started making plans, booking my surgery in Bangkok, booking my flight, booking a room for a month or two in the heart of the city, the other City of Angels, a room within walking distance of the hospital, a room that will be my life… and maybe my death…

            “You haven’t heard a word I’ve said since the word ‘cancer’,” have you?” the urologist asked.  

            “Huh? What? Oh, no, I’m okay,” I lied.  “I’m just wondering what a prostatectomy costs these days.”  Actually I knew very well what they cost, more or less.  As the reality had gradually sunk in that the biopsy might come back positive—or negative, whatever—I’d already Googled the subject, but I was not sure if the doctor would tell me.  That’s not the American way.

            The doctor shrugged his shoulders.  “Your insurance should cover it.”

            “I don’t have insurance.”

            “Then how did you end up here?”

That’s a good question; and that’s a long story.  I’d gone to the emergency room with abdominal pain, where they diagnosed me with kidney stones.  Now I’ve had kidney stones before so this was only a surprise because it was lower in my gut than before, lower than the usual.  I thought it was appendicitis or I wouldn’t have even bothered with the hospital, since that’s not my style.  But with kidney stones they automatically refer you to a urologist, so I figured I might as well go see him, especially since I was already in the system for at least thirty days.  They’d already discounted the emergency service, so I was a step ahead.  I figured this was as good of an opportunity as I’d get any time soon, so I might as well catch up on the dozens of years of medical care I’d largely foregone, especially since I’d been self-treating a case of gout for at least five years by then.  Only God or Goedel knew what else was just lying in wait to trap me as a victim of the law of averages and the law of large numbers.

            “Anyway I’m qualified to do the surgery, if that’s what the oncologist decides is best.  Be sure to stop at the desk to make those two appointments,” the urologist said, while leading me to the door. 

I nodded.  Yeah, right, thanks a lot.  Happy New Year to you, too.  Why me?  What have I done wrong?  That’s a rhetorical question; don’t answer that.  I suppose it’s the price I pay for being a sex machine (it’s my sense of humor that keeps me going).  The numbers didn’t look very good: I had a PSA score over 30 (3 is cause for concern and maybe even a biopsy), and there was cancer in 40-90% of every core sample, twelve of twelve, so definitely not good (I won’t go into Gleason scores, since they mean and meant little to me then and probably even less to you now.  Of course prostate is the slowest of all cancers, and everybody and his brother has it these days—like Jerry Brown and Warren Buffett—but not with numbers like these.

Well I became almost immediately catatonic with fear and anxiety, since I’d already waited almost two months just to get the biopsy, and I was in the process of publishing my first book.  But then survival instincts eventually kicked in and I became extremely anxious to deal with the problem quickly and thoroughly.  Since I didn’t have any insurance, I’d already Googled cancer treatments in Thailand, where not only is medical tourism a well-established practice, but where I also happened to have lived for some ten years—have relatives, speak the language, etc.  I also researched elsewhere.  Assuming that I would probably need a prostatectomy, removal of the prostate gland, the search was fairly easy.  It’s a well-established procedure with well-known parameters and consequences, among them incontinence and impotence (ouch!), the main choice being whether to have it done free-hand or by robot.  I also became vaguely aware of other treatments, but info was less forthcoming, particularly from overseas.

Time for a little back-story: My first hospital stay came a decade ago when I had a motorcycle wreck in northern Thailand.  I broke my wrist and my pelvis.  They swiped my credit card and I went into surgery.  The hospital room cost less per night than a Motel 6 and my peeps slept there with me, Thai food and all.  They even sent an ambulance to fetch me for follow-ups.  Now that’s service!  Here in the civilized world, things are a little more subtle.  No doctor wants to tell you what things actually cost, for what reason I’m not sure.  Maybe they don’t really know or maybe they don’t want to be wrong, or maybe they want to maintain a veil of secrecy over the entire affair, in which hospitals communicate with insurance companies and the public is none the wiser.  I’m hardly the expert, but on the other hand, considering my lack of experience, I’m not too bogged down with pre-existing conditions (pun)—i.e. opinions and prejudices—either. 

So in the meantime I’ve mostly “self-insured” myself, a term which I feel is more accurate than “uninsured.”  Do the math.  Using a rough off-the-cuff estimate that people in their 20’s pay $2000/yr, 30’s pay $3000, 40’s $4000, and 50’s $5000, then add that up, and that’s more or less what I’ve saved over the years, despite my modest income, and the fact that I preferred to be self-employed at all costs (!).  If I’d made it to Medicare age without any major health expenses, then I’d be way ahead, money in the bank.  The problem is that most people can’t do that.  That’s too abstract.  That’s too difficult.  That’s old-fashioned.  That’s bad for the economy.  Banks don’t offer “medical accounts.”  Neither do hospitals.  In fact they really don’t have a clue of what to do with someone just walking or wandering in wanting treatment, like I did.  The only off-system way in is through the emergency room.  They’re required by law to treat emergencies; score one for big government. 

So after the diagnosis my life was increasingly beset with a double dose of fear, and everything was an excuse to worry.  Got a sniffle?  It must be the cancer.  Got a headache?  It must be the cancer.  Tired?  Ditto.  Soreness in the bones?  Especially.  The dividing line between stages for prostate cancer is whether it’s spread or not, and the first place it metastasizes to is the bones via the lymph nodes.  And I was not just scared, either, but scarred, too, feeling dirty… diseased… useless, not physically, mind you, but psychologically, reduced and diminished. 

So after the requisite bone scan, I went to meet my oncologist (sounds apocalyptic), and got my first good news in a week: the cancer hadn’t spread (exhale) as far as they could tell.  So it’s good news and no small miracle considering the level of invasion throughout the prostate gland itself.  By this time I’d scoured the online forums for information and insight, and my case indeed was one of the worst, of people who lived to tell about it.  The survival rates for stages 1 and 2 are extremely high, over 90%; stage 3 not so.  Apparently I hadn’t fully entered Stage 3, which is metastasization.  Still I was high-risk, because I was on the verge of it.

Surprisingly to me the doctor did not recommend surgery, and for a very good reason—that the cancer may indeed have spread but was not yet showing on a bone scan, in which case surgery would not eradicate it—but a combination of radiation and hormone therapy, the hormones to inhibit spread to the bones, the radiation to kill the cancer cells themselves.  That sounded good to me.  The surgery sounded nasty anyway, not just the knife but the catheters and long recovery times and so forth.  The radiation was to consist of 39 fifteen-minute sessions over the course of two months to start in two months. If I’m such a high-risk patient, then why does it take so long to even get started?  Then came the $64,000 (literally) question, drum roll here, please:

            “So what’s all this gonna’ cost me?”

            There was a pregnant pause.  “Well, you wouldn’t want to have to take it out of your own pocket.”

            No, I wouldn’t, would I?  But such is the price of self-insurance.  This was no time to be shy.  “I have to talk numbers with someone.  If I can’t afford it here, then I’ll have to go overseas.”  I’d already inquired the same of my urologist, remember, the doctor who’d done the biopsy and diagnosis, but he’d evaded any real answer.

            The oncologist thought a minute and shrugged.  “You’re probably looking at $15-20,000.”

            I did some rough sums in my head—the cost of a flight, the time wasted being gone, the need for follow-up, etc.  At this point I’d been poked and prodded all over and under my body and only paid maybe $500 outright for what I figured to be $5-10,000 worth of services, the rest yet to be billed.  So I was still somewhat oblivious to final sums and outcomes.  But the first concern should be my health, right?  “OK, let’s do it.”

So I got a hormone shot on the spot, in the butt, actually, a drug to suppress testosterone, on which the cancer apparently thrives, so especially dangerous for us sex machines.  It has some undesirable side effects, too, the most notable of which are absent libido, impotence, hot flashes, osteoporosis, anemia, decreased mental acuity, loss of muscle mass, weight gain, fatigue, and depression, to name a few.  Another option is to take estrogen, the female hormone, but they say that has side effects, too, girlfriend.  So of course then the next question to myself was, “What do I do now?”  I’d recovered somewhat, psychologically at least, from the deepest depths to which I’d been driven in the past week.  I inquired from my printer as to the status of my book Hypertravel, which up until a week before I’d thought was the biggest event of my life, or at least this year, and they seemed to think it’d be ready before January’s end. 

So I booked a flight to Asia for February, not to treat the prostate, but to treat my psyche, which may or may not have been a big mistake.  But when in doubt, space out.  Some people drink or take drugs; I travel.  Itinero ergo sum.  I travel therefore I am.  This trip would continue my “hypertravel” to every country in the world, taking me to three countries I’d never visited—the Philippines, Micronesia, and the Marshall Islands.  Who knows?  This might be my last trip ever.  Regardless, it sounded better than sitting here worrying about something I had no control over.  I’d start treatment when I returned.  So that’s what I did, and it was fine, if not incredible.  Shortly after I arrived back home I received a call from the office of PCIP, the government-backed insurance that I’d applied for in the meantime, for people with pre-existing medical conditions.  They welcomed me into the program, and then informed me that the hospital where my treatment was scheduled was not a member of the program.  Oops. 

So I thought about it some more, like five minutes.  That’s okay.  I’m scheduled.  I’m good.  I’m psychologically prepared.  And I had the money, the $15-20,000 I’d been quoted.  I didn’t want to start all over.  About the same time I finally received a bill, two to five months after the fact, for all the treatment I’d received up to that point.  It was around $7443, more or less what I’d been expecting.  I paid it happily by credit card, glad to get the frequent-flyer miles.  Then came the preparatory work for radiation, including a procedure almost like the biopsy, which felt like a staple gun inside my rectum.  Then there was the procedure putting something up my pee-hole for some purpose I can’t even remember now (“It’ll feel weird, but try not to clinch”).  Whee!  That was fun!  (Nobody ever told me a rectal procedure would feel weird; maybe they thought, you know… to be continued)