Monthly Archives October 2011

Cancer KMA: Part One

My doctor put on his most somber face.  In that instant I read his mind and heard the words before he said them out loud:

“You have cancer.”

That’s when things got really interesting.  But let’s go back a few months first.

Four o’clock in the morning and I have a pain in my lower abdomen like nothing I’d ever felt.   Sheer agony.  No cramp or bruise or broken bone had ever felt like this.  I postpone my morning bike ride, which I don’t do unless the Apocalypse is well under way.  It must be my appendix on the verge of bursting, so it seems wise to make a trip to the hospital.   Call 911?   Tough guy.  I drive.

In the emergency room, a nurse watches me hobble through the lobby and smiles.

“Kidney stone.”

A couple of days in the hospital.  It’s the weekend – I work from my laptop.  Don’t have to miss any days in the office.  At one point a guy comes to my door.

“Hi, I’m Dr. XXXX (that’s not his real name – you’ll see why…).  Let’s give you a prostate exam!”

Wow, and he doesn’t even offer to buy me a drink.

I go home.  Turns out I had managed to give myself a kidney stone.  Here’s the recipe: Bike like a maniac in the morning and replace most of the five pounds of fluid you lose, then lift in the evening and, if you’re really nuts, throw in an extra bike ride at night to burn off the extra energy.  Oh, and don’t replace those fluids because it’s late and you don’t want to wake up in the middle of the night to pee.  Repeat for a few months until your kidneys are just begging for fluids.  “Please, give me some water, you moron, or I’ll grind almost to a halt and make a stone.”

I’m pretty sure I heard my kidneys telling me that, but thought it was the neighbors fighting.

That was Funny Thing #1.

Funny Thing #2 happens six months later.  On my way to an unrelated appointment, I pass a door with big letters spelling out the name of…Dr. XXXX.  I had no idea he existed anywhere but at the hospital.  So I stop by to look at the report.

The nurse shakes her head.  “If he saw you in the hospital, then you have to make an appointment – the records need to be sent over.”

I make the appointment for the next week and come back.

I sit down with Dr. XXXX.

“I’m glad you came by, since the exam I gave you  six months ago was abnormal.”

I figure he means he gave me an abnormal type of exam, or he behaved abnormally during the exam.   Turns out he meant the results.

“I’d like to do another exam.”

Cavity search number two!  Still no flowers or dinner first.  The results are similar.  Stern look and “I’m finding abnormality.”

“When you say ‘abnormal,’ do you mean two out of three guys have something a little unusual and I’m one of them, or do you mean ‘that’s some weird stuff I felt down there’?”

Straight faced, “I’d like to do a biopsy.”

Have you ever had a prostate biopsy?  It involves five people including a “pre-med student” – isn’t that a college sophomore??? – in a room the size of a large toaster and me with my butt hanging off the edge of a small exam table.  Oh, and a tool that is like one of those geologist’s devices that takes core samples from rock.  That’s right, “core samples.”  Let’s move on.

Biopsies just sound bad.  No one ever ordered a biopsy of a sunny day.  Biopsies  happen because some doctor somewhere thinks something is WRONG.  And they don’t know right away what is wrong.  They send the damn stuff ripped from your body to Johns Hopkins on the other side of the country and wait a very long week for the results.  Okay, fine.  Worst case scenario was a little prostate cancer.  The old saying is that no guy dies from prostate cancer and  most of them die with it.  Uh, wait – that’s for old guys.  I was 48.  Thirty years early for the “don’t sweat it” approach.  But what the hell – I’m as healthy as a horse, strong as a bull, with Olympic lungs.  Invincible.

The next week I’m at work, heading out to lunch with a colleague.  My cell rings and I recognize the number.

To my colleague: “Hey, can you give me a minute?  I’ll meet you in the lobby and we can walk over to Burritoville.”  I go every day.  I mean EVERY day unless a colleague talks me out of it.

I step into an office and take the call.

“Hi, this is Dr. XXXX.”  (Still not his name).

Pause.  “Okay, I’ll assume that pause means you have my results.  What did they find?”

Shorter pause this time.  “I’d like you to come in to discuss the results.”

Big sigh from me.  I’m not interested in drama.  “I assume that means they found something, or you’d say otherwise.  Let’s skip the soft landing – is there cancer?”

I can feel him starting to pause but he interrupts it.  “Yes.”

Okay, that’s a start.  “I’ll make an appointment, but let’s cut to the chase.  Is it bad?”  I assume the answer will be some version of “no,” so I’m surprised when he says:

“There were cancerous cells in most of the samples.”

Now, “most” is somewhat meaningful here because the industrial-strength, diesel-powered boring tool they used to excavate my prostate during the biopsy takes twelve samples.

The burrito that afternoon tastes a little bland.

Back to the doctor’s office.  We look at pictures, read reports.  Prostate cancer, pretty far along.  There are good treatment options, etc.  Oh, but first we have to see if it’s spread.

Spread?  Turns out that you’ve got two options.  Option 1: the cancer is only in the prostate.  Treat it.  How aggressively depends on how far along it is.  Option 2: the cancer has spread beyond the prostate.  That’s unpleasant.  When people die from prostate cancer, it’s because it spread.

“Hmm…so which is it for me?”

Of course, there’s only one way to find out – scans.  Brain, bone, organs, luggage.  How worried am I at this point?  Honestly, not very, but one thing is very much on my mind.  If it hasn’t spread, we treat it.  It’s all business, no matter how far along it is.  But if it has spread, I’m going to have to tell my kids that their daddy might not be around for…well, everything they do for the rest of their lives.  Now I’m getting a little pissed at this cancer crap for potentially causing my kids suffering.  Unacceptable.  If someone causes my kids pain, they are in for a world of hurt from me.  No exceptions.  Prostate included.

So we scan.  Results come back.  The cancer is knocking at the door – it WANTS to get out, it’s TRYING to worm its nasty little self out of my courageous prostate, but it hasn’t.  Not yet at least.  Funny Thing #3: if any of this had happened a few months later – the kidney stone, the unrelated visit to the office – someone else would be writing this because I’d be…uh, gone.

But that’s not what’s going to happen and I like the odds now because it’s business – treat, recover, move on.  And the conversation I’m going to have with my kids is very different.

Quick side note here.  If not treating it like a life-threatening, world-changing, terrifying event sounds blasé, that’s because, as anyone who knows me will attest under oath, I am a bit of an odd duck.  I care about two things: my kids, and getting things done.  In that order.  The first is covered at this point, and the second is on deck and ready to bat.  Freaking out won’t help.

Come back later and read the rest.  And by “rest” I mean finding the right doc, having surgery, recovering, and trying to set speed records for it all.  Shooting for the Guinness Book.  For me that’s the interesting part of the story.  It was something I could DO, something I had control over.  It was time for CancerKMA (that’s right: Cancer – kiss…my…ass!).

Steve

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Cancer KMA: Part Two

Quick recap: too much exercise leads to a kidney stone that instigates an exam that reveals cancer that would have remained undiscovered if chance and the universe hadn’t intervened.  On tonight’s episode, which is a little anticlimactic because we already know the protagonist isn’t going to die, we follow his escapades.

I’m having a chat with Dr. XXXX.  What are my options?  What’s the recovery rate?  Does it return/metastasize/lurk for years?  I’m hungry for data, because that’s how I do it in the real (non-cancer) world so why should this be any different?

Dr. XXXX only performs the traditional surgery – slice open your belly (“belly” is a little diplomatic) and cut out the prostate.  In the old days, they’d cut right through the nerves the prostate rests on.  Those nerves are…important.  VERY important.  Nowadays, they engage in “nerve sparing” surgery.  That means instead of just buzz-cutting through the nerves, they try to gently remove the offending organ while leaving the nerves intact.  Like peeling a soft-boiled egg out of a shell.  Sometimes that goes really well.  Other times, you get shreds and yolk and a lousy breakfast.

The main problem with the traditional surgery is the recovery time.  Weeks and weeks, because a big, wide slash through muscle doesn’t heal overnight.

“HOW long did you say I’d have to stop working out???”

Dr. XXXX describes a second approach.  “A few years ago, a machine called the Da Vinci became popular.  It makes a series of smaller incisions and the surgeon operates robotic arms to remove the prostate.”

I’m picturing Tom Hanks and some crazy albino guy hunched over me in the operating room (Da Vinci Code?).  But I’m in, because smaller cuts means faster recovery.  Buh-bye, Dr. XXXX.

Good news: City of Hope is one of the top cancer hospitals in the country and is under an hour from my home.  More good news: One of the best urology oncologists with vast amounts of Da Vinci experience is there.  Bad news: The hospital is full of people who have real, deadly, how-long-am-I-going-to-live cancer.  Not my wussy little one-organ cancer, the kind that hasn’t spread and is totally treatable.  Still, I’m fortunate to be part of this exclusive club of people getting extraordinary treatment from the best in the biz.

On my way out to COH I notice a small sign on a post.  Simple, unobtrusive, guiding, it says City of Hope.  This doesn’t qualify for Funny Thing #4, but for the first time, I get a little emotional.   Just a lump in my throat and that misty feeling you get in your eyes when you see your kids do something unexpected and loving, or when there’s a touching scene in an otherwise stupid movie and you weren’t expecting to be moved.  I let it wash over me, blinking a little, and maybe because I give it its due it goes away.

Free valet parking at the cancer hospital on your first visit.  Very cool.  I’m Platinum at Starwood hotels and don’t get free valet parking.

The hospital processes me efficiently and quickly.  This isn’t their first time at the dance.  Blood, vitals, etc.  Then I meet with Dr. Kawachi, renowned fixer/genius/Mother Teresa/real Da Vinci of prostate cancer.  I’m not sure what I was expecting, but he didn’t match it.  Sweet, gentle, almost wizened man.  Soothing voice, matter-of-fact and a listener.  I start asking him questions – standard recovery time, ways to minimize recuperation, angle of entry of the blades on the Da Vinci.  His tone doesn’t change, his demeanor remains gentle, open, helpful.  He drops any hint of needing to hold my hand and assuage me.  He goes along with me as I do what I do – gather data.

“Let me tell you a couple things so you understand.  I want the fastest possible recovery – anything you can do toward that, do it.”

We have a very clear conversation.  No BS.

“Well, if I make the extraction incision a little lower than usual, I won’t cut as much muscle.  That should help.”

I like this guy.

“I trust your judgment to do what works, and to balance that with the fact that I plan on breaking records to recover.”

We talk about typical recovery times – a couple weeks off of work, longer before I can work out.

“Nope.  That’s too long.”

He smiles.  I smile.  We set a date for the surgery.  It’s soon – the cancer keeps knocking at the door.

A couple weeks later, I go back to COH.  Dr. Kawachi’s only flaw: he does surgery on Friday, not Saturday, so I have to take a day off of work.  Early in the morning they’re prepping me.  The anesthesiologist reads my note where I explicitly tell him to use the minimum amount of drugs necessary to keep me under (that stuff stays in your system – I don’t want to have to deal with the extra time!) and promptly labels me (silently) a pain in the ass.

A couple hours later I wake up.  A little sore.  Turns out the Da Vinci truly is a work of art.  I look down at my “belly”.  Seven incisions, all an inch or smaller.  One for the light , another for the knife, another for the grabber to rip my prostate out, and a couple for…I don’t know, alien probes.

Then I look up and my ex-wife is sitting there.  I assure her I am alive and the life insurance will not be paying out yet.  Her disappointment is palpable (okay, quick confession: that last bit is silliness.  My ex-wife – let’s call her “Robin” – is one of the best people I know.  We amicably co-parent and she remains my emergency contact, and vice versa).

Dr. Kawachi stops by.  We have a little chat.

“It’s good if you can get up at some point today and walk around a little.”  He puts his hand out as I reach to lace up my running shoes.  “Just a little walking around the hospital.”

Then we get down to business.

“How aggressively can I push recovery?”  In fact, I ask half a dozen questions along these lines just to make sure he knows what I’m saying.

His answer is perfect: “Pain is your guide.  You won’t do any damage if you use pain as your measure.”

Did I mention I like this guy?

I take a couple dozen strolls around the hospital and I’m ready to go home.  My pal Christine – who is more familiar with cancer than anyone should ever have to be – is there along with Robin.  They’re going to drive me home – hospital rules.  Fat chance.  I’ll drive.

One complication: following my little surgery, I notice there is a hose attached to my “nether regions”.  It is a catheter.  If you don’t know what that is, I’m very happy for you.  One of the reasons they don’t want you to drive yourself home, aside from the obvious, is they are concerned you might have to slam the breaks on and in the lurching of the car, rip out your catheter.  If you think a prostate exam is invasive, yanking out your catheter makes it look like a holiday.

I don’t plan on slamming on the breaks.  After some negotiation with Robin and Christine (and some subterfuge [lying] to the hospital staff) I agree to permit Christine to ride in the passenger seat in case I pass out.  We make it home safely.

Time for another break…Part Three below.

Steve

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Cancer KMA: Part Three

Surgery was yesterday, Friday.  Today it’s Saturday and I’ve driven myself home.  And I have the kids on Saturdays (and Tuesdays and Thursdays and…) and no catheter and bag or swollen incisions or cancer-free innards is going to keep me from my kids.  Besides, let them take care of me for a change!  (Digression #2 – that’s also silliness.  They are loving, caring, respectful, independent, attentive – oh, and brilliant, beautiful and…still, let ’em take care of me tonight!).  The night goes well though I must confess that peeing in a bag is bothersome.

The next day they go to their mom’s.  I look at my stationary bike.  I look at the hose-and-bag situation.  I do some quick calculations.  Five minutes later I’m on the bike with a chair next to me serving as “coat rack” for the catheter bag.  Feels pretty good.  Next day I go to work – wearing my “cancer pants” – a pair of black track pants.  They slip up over my swollen middle and allow me to strap my bag to my leg.

Only a couple people at work know about my weekend adventure.  One of them sees me at work and says “didn’t you have…” and then just rolls her eyes.

Time out: this again sounds like I’m a little blase.  I’m not.  I’m just a data hound.  If something hurts but is not doing damage, then it is your choice whether to do it or not.  And if it doesn’t hurt, then there’s no reason not to do it.  Exercise, work, etc – I’m following the doctor’s recommendation and letting the pain measure what I can do.   Standards aren’t rules.

Here’s a very cool thing – COH has a twenty-four hour on-call nurse.  You ring any time day or night and she’ll answer or get right back to you.  A couple days after the surgery, I notice that an area of my body that is usually not pitch black suddenly is.  I am slightly alarmed.  It’s 2 a.m.  I call the nurse. Margaret answers.  She sounds experienced.

“Honey, I’ve seen ’em be yellow, black, red, purple…you’re fine.  Don’t need to worry unless it hurts a lot.”

My relief is palpable.

A week later I pop into the hospital to have my catheter removed.  It is an interesting sequence of events.  Everyone handles it differently.  The nurse explains the process, tells me it will be fine, attempts to be soothing, and I give her a short version of the same speech I gave Dr. Kawachi.  She’s a pro – twenty seconds later we’re done and she practically hugs me; there’s a guy in the next room who’s been there for two hours and I think she’s ready to order valium.

There are two major side effects of having a prostatectomy (fancy word for the slash-and-grab  that took the organ central to the ability to reproduce.  Quick side note: I made a “deposit” at the cryogenic lab before my surgery.   Just in case I need to make some more stunning children).  The side effects are a result of the fact they are re-doing your internal plumbing.  Things that were attached one way are now attached another way.  And, as mentioned earlier, nerves are traumatized.  So what are these two common side effects?  Trying to think of some delicate euphemisms here…Never mind, here goes.

Incontinence and erectile dysfunction.   NEITHER is a friend.

Going for delicacy at this point.  By thirty days after the surgery the former was nothing more than a memory.  On the other hand, re-invigorating those poor traumatized nerves that wanted to go into hiding for the rest of my life was a different matter.  Standard treatment: a year of daily Viagra to remind the guys what a normal response is.  My response: No.  Freakin’.  Way.

So I begin a…”regimen.”  I record it (in writing and in code, of course – so my kids don’t come across down the road.    On my first visit to Dr. Kawachi six weeks after the surgery, I show it to him.  He is quiet for a moment.

“That’s very interesting.”

Fast forward three months.  I take my first PSA test.  If there are detectable levels of PSA in the first year, it is a very bad sign.  My first test comes back “undetectable.”  I continue my recovery.  Three more months, then a year after surgery – still nothing.

It’s now been two years.  I get the PSA test done on schedule, more or less.  Physically, all is good.  Emotionally, all is good.  Spiritually?  My life did not change, I did not suddenly go sky-diving or look at the sunrise with fresh eyes.  I did not wake up and realize life is fragile and I have to grab every moment.  I already knew all that.  For fifteen years, every single day I’ve looked at my kids and said some version of “I can’t believe I’m lucky enough to have them.”  Before cancer, I grumbled about work or bad drivers or why I wasn’t writing enough.  After cancer, I do all the same things.  But I also loved my life before cancer and I love it now.  Before cancer I questioned my choices, made fun of myself, wondered if I were moving through the world with too much of a sense of entitlement and ownership; after cancer I do the same things.  There are things I like about myself and plenty I don’t.  That was true before and after cancer.

What I didn’t know before cancer, though, was something I couldn’t have learned without it: that my view of the world is consistent, that I am who I think I am.  I don’t know if that is good or bad.  I just know it is real, and it is somehow comforting.  Wait, that’s not the word – it isn’t comforting.  It is…refreshing.  Encouraging.  Interesting.  And maybe just a little disconcerting.

So at some level I suppose I should thank cancer for the experience.  For the insight.  For the – “side effects.”  But I’m putting all that aside.  Instead, the only message I have for cancer is: Kiss My Ass.

Steve

Murder In Mind at Amazon

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