Excerpt from Chapter One: Six Scary Words

On a cool November morning in Walnut Creek, California, I waited in a small exam room to see Dr. Brian Hopkins.  Just as with my last appointment with him some seven years ago, he was running late.  The sterile-feeling room lacked any old magazines, and I had forgotten to bring a book with me.  The only available distraction was a poster featuring a full-color cutaway drawing of the male genitourinary anatomy.

“Clever marketers, these urologists,” I thought.  “What a great name for a urology practice.  Pacific Urology—it makes one think of the Pacific Ocean and palm trees waving gently in the warm sea breeze. Calming and relaxing.”

Which was not exactly how I felt at the moment.  Instead, I could barely suppress the surge of nervousness that always accompanies me to these doctor visits.  I was naturally dreading the probing around “down under” that accompanies any visit to the urologist.

“Hi Craig,” Dr. Hopkins said, as he strode into the room with a friendly smile and handshake.  He was about the same height as I, although in better physical shape, looking as energetic and youthful as when I last saw him almost seven years ago.  “Good to see you again. It’s been a while.”

“It certainly has,” I replied with the packaged cheerfulness I’ve always tried to summon in these doctor-patent situations.  The professional pleasantries thus completed, I began to explain why I had come to see him. Doctor Hopkins took notes on his clipboard as he listened to why I was there.  My story began about two months earlier.

The steady rain that had been beating down on the Chicago suburbs for three days had finally ended.  My wife, Susan, and I were completing a five-day visit with our son, daughter-in-law, and two young grandchildren.  This morning we would start the final leg of our leisurely cross-country drive from our home in the San Francisco Bay Area to our vacation home in Massachusetts.  Here, we planned to enjoy autumn in New England, as we often did, preferring the crisp days and cold nights of Massachusetts to the arid fall heat of Northern California.

It was barely light enough to see the face of my watch reading 5:30 a.m. as I climbed out of bed.  Like many men past a certain age, I headed straight to the bathroom.  Urinary relief achieved, I was shocked to see several reddish clots in the toilet bowl.  Looking up, the mirror over the sink revealed a black and blue mark stretching from my left kidney area to my navel, a dramatic souvenir from a household accident that had occurred three days ago in this very bathroom.  While attempting to drill into a stubborn ceramic tile in the shower, I had slipped on a wet spot on the floor.  My fall was brought to an abrupt and painful halt by the aluminum track of the glass shower door enclosure mounted on the tub rim.

“There must be some internal bleeding from that fall,” I self-diagnosed.  “I’ll need to get that looked at when we get to Massachusetts.”

As we drove eastward that morning, we discovered that recent rainstorms had flooded roadways everywhere, forcing us into a time-consuming detour at the Illinois-Indiana border.  Morning coffee filled my bladder as we sat in the excruciatingly slow-moving traffic.  At last, relief was in sight.  A McDonald’s loomed into view.  Pulling into the parking lot, I lost no time in finding the men’s room.

The sight in the urinal was not encouraging.  There was blood everywhere, including several sizable clots.  My stomach lurched.  I knew I should really have this checked out—and soon.  But we were now in an unfamiliar part of Indiana.  The idea of finding an emergency room here, of all places, was unappealing at best.  Electing to exercise my male prerogative to tough it out, I decided not to mention my situation to Susan.   I would tell her later when we were closer to Massachusetts.  I even naively hoped that this problem might just go away by itself.

Withholding information from my wife was not normal behavior on my part, especially about something that felt so serious.  After nearly forty years of marriage, there were few secrets remaining between us.  There was something about her habitual honesty that inevitably compelled me to come clean with her, and I knew that I would be telling her about my condition soon.  But to tell her right now would lead to her insistence on finding a hospital immediately, here in the Indiana outback, and then who knows how long we would be stuck waiting in an emergency room (ER).  There was no pain associated with the blood, so I was able to continue driving, trying to block the scary situation from my mind.

We made slow progress heading east that day.  At rest stops along the Indiana Toll Road and the Ohio Turnpike, I headed nervously to the men’s room, each time hoping that what I had seen earlier might just disappear.  But there was always more blood.

Finally, we pulled into the parking lot of a hotel abutting the New York Thruway, exhausted by a long day of driving.  As we lay in bed just before drifting off, I steeled my courage and said, “Uh, I have a problem, I think.  I’ve been peeing some blood today.”

Susan shifted instantly from sleepiness to high alert. “What did you say?”

“Well, you know that fall I took on Friday, and the big black and blue mark I got?  I think I must have injured something internally.  I should probably see a doctor when we get to Massachusetts.”

“How come you didn’t say anything earlier? You need to have this checked out.”

“Well,” I fudged, omitting mention of the traces of blood I had seen in the early morning at our son’s home, “It really didn’t show up till we were in Indiana this morning, and I did not want to be stuck in an ER in some little rural town for who knows how long.”

“You really should have told me before this.  This is significant.  You need to get it looked at.”

“I know. I’m sorry I didn’t tell you earlier.  But it’s bleeding less now, so I think things are improving.”

“We are headed to the ER as soon as we get to Massachusetts.”

When we arrived in Massachusetts the following day, there was no longer any blood in my urine.  Only the black and blue mark remained.  I argued that it probably wasn’t necessary to go to the emergency room after all, but Susan insisted, “You really need to have this looked at.”

An emergency room is hardly the ideal venue for diagnosing the root causes of symptoms that have vanished.  But given our insurance situation, it was nearly impossible to get an appointment with a primary care doctor in Massachusetts.  And since the Commonwealth lacks the freestanding “urgent care” clinics we were accustomed to in Northern California, we had no choice but to turn to the expensive inefficiencies of the ER.

After I had gone through the usual opening ceremonies of an emergency room visit—putting on a gown, getting my blood pressure and pulse taken, having an IV inserted, and donating a urine sample—Susan and I settled in the curtained cubicle to wait.  After showing the doctor my purpled abdomen and offering my “it must be an internal injury” theory, he ordered a CAT (CT) scan.

After the CT scan was finished, we waited for another hour.  Finally, the doctor reappeared with all of my test results in hand.  “You have a urinary tract infection (UTI),” he announced. “And the CT scan is clear. It doesn’t show any sign of injury. You should set up an appointment with a urologist.”  He proceeded to give me a prescription for an antibiotic and handed me a compact disk with the CT scan images on it.

I am one of those relatively few men who have experienced a UTI every two or three years for most of my adult life.  But this certainly did not feel like a classic UTI; nor had I ever had blood in my urine with previous infections.  This time, there had been no pain, just blood, and even that had disappeared by now.  Rather than challenge the diagnosis, however, I gratefully opted to leave the ER.  So I quickly took my prescription and disk, dressed, and we left.

However, the ambiguous outcome of the emergency room visit did not satisfy me.  I was left with a nagging suspicion that the medical staff believed something more serious was going on, and the real problem had been papered over with a UTI diagnosis.  I also believed that the medical team had simply ignored my theory of a fall-related injury as the ranting of a misinformed layperson.  But I knew full well that my self-diagnosis had inconsistencies.  Why did the bleeding not start until three days after the fall?  Why hadn’t the CT scan revealed any sign of internal injury under the black and blue on my abdomen?  Because I wanted desperately to believe I was okay, however, I continued to cling to my bathroom fall as the cause of the bleeding.

Since I was unable to set up an appointment during the six weeks we were in Massachusetts, I made a date to see the urologist after we returned to California.  This was a physician I already knew, Dr. Brian Hopkins, who had treated me for a urinary tract infection more than seven years ago in 2001.  And this is how I ultimately ended up in this exam room at Pacific Urology, telling my story to him.

Dr. Hopkins listened patiently, nodding, and taking notes.  “Let’s take a look at the CT scan,” he said.  After a few moments of scrolling through the scan’s images on his computer, he concluded that the scans were good quality, and like the ER doctor, he did not see any obvious sign of fall-induced injuries.   My “internal bleeding” theory began to seem much less credible—even to me.

No man’s visit to the urologist is complete without the obligatory digital rectal exam (DRE), and as I had anticipated, Dr. Hopkins did not disappoint me.  “Let’s feel your prostate,” he said.

After I assumed the position known to most men over the age of fifty or so, the doctor’s latex-gloved finger probed, stopped, and probed some more.  He seemed to linger where other doctors had efficiently gotten in and back out again.

“Uh, oh,” he said. “Bad prostate.”

The “bad prostate” pronouncement came as a shock.  That there might be a problem with my prostate had not crossed my mind.  I knew my prostate was enlarged, but the “uh, oh” had a distinctly ominous tone to it.  I suddenly feared that Dr. Hopkins’s statement might mean something serious.  But even so, I didn’t immediately think of cancer.  At my physical exam eight months earlier, my primary care physician performed a DRE and told me that my prostate felt normal.  “Somewhat enlarged, but nothing out of the ordinary,” she had assured me.  And my prostate-specific antigen (PSA) numbers—which become elevated when a man has prostate cancer or any number of other prostate conditions—had remained steady at around 1.5 for the past seven years.  The current medical wisdom was that a PSA value below 4.0 was “normal.”  (I would learn later that what should be considered a “normal” PSA is the subject of much debate among medical experts.)

Dr. Hopkins, unaware of my growing anxiety, continued in his professional manner, “We need to schedule a prostate biopsy. And we’ll need to do a cystoscopy, too.”

The biopsy was scheduled in the busy run-up to Christmas.  “What a terrific Christmas present,” I thought. “A needle biopsy through my rectum.  I can hardly wait.”  During the intervening month between the discovery of my “bad prostate” and the biopsy, I reflected occasionally on what Dr. Hopkins’s statement might really signify.  The possibility that cancer could be the diagnosis finally entered my conscious mind.  But I successfully suppressed these thoughts as quickly as they arose.

In mid-December, I was back in an exam room at Pacific Urology, this time curled up on my left side, naked from the waist down, my modesty barely preserved by a flimsy paper drape.   A prostate biopsy is an uncomfortable but bearable procedure, during which the doctor uses a spring-loaded, needle-tipped instrument to remove small samples of prostate cells, which are sent to the pathologist for analysis.  Typically, the urologist removes anywhere from eight to twelve samples from various regions of the prostate gland.  A prostate “needle biopsy” is the only reliable method to assess cellular conditions inside the prostate—and the only way to determine whether or not cancer is present.

Guided by the ultrasound probe inserted into my rectum, Dr. Hopkins worked on capturing twelve samples of my prostate—six from each side of the gland—by repeatedly squeezing the trigger on his trusty spring-loaded apparatus.  A lidocaine-dampened sting accompanied the ‘snap!’ of the spring releasing—a sound similar to the type of old-fashioned cap gun I proudly owned when I was about eight years old.  As he worked, we chatted amiably about Susan’s and my peripatetic life divided between California and Massachusetts.  The otherwise-pleasant conversation was interrupted periodically by the snapping sound and the momentary sting deep inside my pelvis. Obviously experienced at this, Dr. Hopkins completed the biopsy in less than ten minutes.

“OK, we’re set.  I’ll send these off to the lab and we’ll have the results in a couple of weeks,” he said. “That’s a little longer than usual because of the holidays.”

“That’s fine,” I replied.  “I’m perfectly happy to enjoy Christmas in the meantime.”

I had a hazy memory of reading something about the “seven warnings signs of cancer,” one of which was blood in the urine.  But I quickly decided that these warning signs were obsolete, coming from the dark ages before PSA tests.  And my PSA level was normal, anyway—and had been normal for the past seven years.  The happy distraction of my grandchildren celebrating Christmas quickly pushed the dark thoughts out of my mind.  Surely, I rationalized, I was just fine.

As the calendar moved to the appointed day, I suspected that the results of the biopsy might be back from the lab by now.  But no one had called to discuss the results yet.  So, choosing to believe that “no news is good news,” I decided that the biopsy results were doubtless normal.

Arriving for the cystoscopy, I was again covered from the waist down by the paper drape, this time while lying uncomfortably on my back on the too-short exam table  After the doctor’s assistant administered the lidocaine anesthetic to numb the relevant body parts, I lay there, waiting for my urinary tract to be explored with the aid of fiber optics.  After sufficient time had passed for the drug to kick in, Dr. Hopkins appeared, and with his usual cheerful aplomb, he grasped the business end of the probe and began the task at hand.  A “cysto,” in the urological jargon, involves inserting a lighted, flexible fiber optic tube somewhat analogous to a plumber’s ‘snake’ up the urethra and into the bladder.  The fiber optics are connected to a magnifying instrument ‘scope,’ which allows the doctor to examine the inside of the urethra and bladder.

Suffice it to say, a probe squeezed down the full length of the male urethra creates a sense of alien invasion.  It is not painful (the drugs have taken care of that), but there are odd sensations that do not occur naturally.  Skilled urologists are usually quite efficient, taking a thorough but speedy look at the interior of the bladder and urethra before removing the cystoscope, providing instant relief.  This time, however, Dr. Hopkins kept the probe lingering uncomfortably inside me, obviously examining something quite carefully.

“I see a lesion in your urethra that I want to check out further,” he stated matter-of-factly. “We’ll need to schedule a urethral biopsy.”

“Uh, oh,” I thought.  “He’s starting to take this situation too seriously.  Something must not be quite right.”

Finally he withdrew the scope.  And as if on cue, his assistant knocked on the door and appeared with a paper in her hand.  “Here is the lab report you asked for, doctor.”  Tossing caution to the wind, little caring that I was still lying half-naked on the exam table covered by a now-crumpled paper drape, the question that up to now had been so easy to ignore for so many months spilled forth:  “What does it say?”

“You have a nasty prostate cancer,” he answered

Six scary words.  Nine syllables.  I looked around.  The small exam room seemed to lose what little color it had.  A gray haze of “this really isn’t happening to me” washed out all other thoughts.  Much like my urinary tract, my comfortable world—shrouded in denial for so long—had suddenly been invaded by an alien presence.