Fringeville #107, May 31 2014

(Note: two days after my last post I underwent a robotic prostatectomy at Penn Presbyterian Medical Center in Philadelphia. The surgery was the right choice for me, but every prostate cancer case is different. I have learned it is a very complex disease. The preferred treatment will vary from person to person according to the stage of the disease, the patients age, and other factors. Please, please do not assume that my decision on the treatment for my cancer is the right decision for you or a loved one. Trust me: it is a process to arrive at the proper treatment. For those of you interested in seeing a robotic surgery, click here to see Dr. Lee perform one in Seoul, South Korea. Be advised that the video contains graphic material of an actual surgery, and may not be suitable for all viewers. I will work my way up to posting about my surgery and ongoing recovery, but for now I'm going to pick up where I left off: dealing with the diagnosis and its impact on my family and me.)

Timing is Everything...

Timing. That's the theme of this post.

From the disease standpoint, the timing has been incredibly good. My prostate cancer pre-surgery indicated that I had a moderately aggressive but locally confined tumor. The clinical stage (meaning the assessment of the tumor by way of all the evidence gathered before surgery) was somewhere in the Stage II spectrum. There are a wide range of possibilities under Stage II, and until a prostate is removed and examined by a pathologist there is a fair amount of wiggle room on a tumor's actual staging. The pathologist issues the final pathological staging of the tumor, and that may vary from the clinical staging. A tumor may be downgraded or upgraded, based on all the final reports and the findings of the surgeon during the procedure. (Click here for more information on prostate cancer staging)

My timing as far as getting the physical that started this whole shebang was also good. My previous PSA blood test was done in July of 2011. The PSA was an unremarkable 1.78 (PSA is a protein produced by the prostate gland. High PSA levels may indicate prostate cancer, however there are other reasons a man's PSA level may be elevated.) When my PSA was tested in February of 2014, it was 6.17 and that got my doctor's attention. It wasn't so much the higher number, but the rate of change over that relatively short period of time. That rate of change, called PSA velocity, was another indicator something might well be going on in my prostate.

Long story very short, that is what led me to the biopsy, which led me to the phone call that started all these blog posts when I hung up and realized I had cancer.

Which takes us back to timing.

How does one tell their family they have cancer? More precisely, when?

When I hung up the phone after getting the news, I realized I had to make decisions. Who needed to know? Who didn't? And when to tell them? And in what order?

My wife, of course, was at the top of the list. No one else would be told until I broke the news to her. Next would come my children, then my siblings and a very, very few others. That would be it initially.

So there, on this beautiful Thursday afternoon, I had to decide when to tell my wife. While I was pondering this, she texted me from work to bring her an iced coffee. Off I went to Dunkin, then down the road a bit to the daycare she works for.

As I waited for her at the door, I realized this was the wrong time to say anything. You don't hand someone a coffee and say: "Here you go. Extra cream & sugar. I've got cancer. I had them put a shot of caramel in there, too. Enjoy the rest of your shift!" 

No, this wasn't the moment. It would be horrible, horrible timing to drop that little bombshell on her at work. I would wait and tell her later. She wasn't expecting the results of my biopsy until the next day, so I just handed her the coffee and left and she suspected nothing.

When I picked her up from work, I realized I couldn't tell her in the car. Again, that would be horrible timing: "Hi, honey, how was work? Was it a good shift? The biopsy was positive. Wanna do burgers or pasta tonight?"

We drove home in silence.

As I prepped dinner, I decided telling her before we ate would also be horrible, horrible timing. Nothing kills that evening appetite faster than a cancer diagnosis. It would have to wait until after supper.

But after supper, I realized that I'd better wait a while. Nothing brings dinner back up faster than hearing your spouse has cancer.

No, no... I'd wait an hour or two, after my daughter, who always goes off somewhere in the evening to visit friends or catch a movie, left the house. That would be the perfect time to break the news to my wife. Then we could plan when to tell our kids.

Only my daughter stayed in that evening and the three of us sat in the living room watching god knows what on television for the next couple of hours. And I patiently waited for my daughter to go to bed, because that would be the best time, and as I keep saying, timing is everything.

Ten minutes or so after my daughter went to bed, I broke the news to my wife. Here's a condensed version of what transpired:

She:  You tell me this now? How can you tell me this now, right before bed? What horrible, horrible timing!

Me: Well, telling you at work didn't seem right. Telling you on the ride home didn't seem right; I didn't want you jumping outta the car. Telling you before dinner would have ruined your appetite. Telling you after dinner might reintroduce you to what you just ate. I wanted to tell you before I told our daughter, so that we could tell her together.

She:  But Jesus, right before bed?

Me: When, then? First thing in the morning? That's no way to start the day. "...Good morning, honey, I've got cancer, time to go to work. Have a great day!"

She:  But...

Me: When, exactly, is it a good time to tell someone you have cancer?

Silence, from both of us. You see, we'd just stumbled headlong into another of the laws of the Universe:  There is no good time to tell someone you have cancer.

* * *

Fringeville #106, May 12 2014

A Chinese curse kind of week...

Liquid Dyno-Mite!

I have to go to Walllyworld later.

My Wallyworld grocery lists usually look like this:

Coffee (K-Cups)
Almond Joy creamer
Wing sauce
Coffee (Whole bean 8 O'Clock)
Almond Joy creamer (better get two)
Wings
Wing Sauce (backup bottle)

This visit, I'm going with this list:

Depends Guards for Men
1 Bottle of Magnesium Citrate
4000 rolls of toilet paper

Yeah, gonna be an interesting week...

* * *

Fringeville #105, May 05 2014

For the millions* of women who have asked me: Boxers or Briefs? Depends. For a little while.
* The author is prone to exaggeration.

Reality slaps me in the face at Walmart. Reality. I hate that ##$%#$!!

I think I wrote at some point that I'd have the occasional down day. Well I had one yesterday, though it likely wasn't obvious to very many people.

I had a fantastic Saturday, for the most part. I helped put together a big political event. Perhaps the biggest thing I've ever done. The only down side of the event is that my apolitical loved ones would rather stick needles in their eyes than attend anything political, so I was pretty much on my own. I respect that, but there was still a part of me that wanted them to see what it meant to me to put something like this together before I enter a period of ...oh I don't know ...I suppose the polite word is "unpleasantness."

Yeah, we'll go with that. Unpleasantness.

So I spent half the day on the event, starting with final prep work at 4:30AM. Then came the event itself. I finally headed home around noon, where I found the grandchildren visiting. After about an hour or so with them, I headed off to work.  I can honestly say that when I hit the sack that night, still in a pretty fair mood, I was probably more tired than I've been in decades. Just worn to a nub. I wanted to sleep until at least 7AM.

Instead, the alarm in my phone went off around 4AM and long story short, I was up for the day. And because I had too little sleep while already exhausted, I set myself up for brooding.

So there I am, in the wee hours, exhausted and unable to fall back asleep. I ended up working on home finances until it was time for church. Finances were a downer Sunday morning. It is becoming apparent that even with good insurance, getting sick is going to be expensive. Church put me on the rebound, as it always does, especially on Sundays like this one when I am "on duty" as a Eucharistic Minister.

Yet even here, my thoughts wandered to the morbid. I realized that if my upcoming surgery (more on that in another post) went horribly wrong, this could be the last time I would experience the joy of receiving and giving Communion. I know the chances of something going that wrong are small, but I also know one of the profound, unshakeable laws of the Universe: Shit happens.

Well, that self-pity train just kept rolling. I started thinking about all the things that would blow up if I wasn't there to keep them going. I won't list them, but there were a kajillion of them racing through my head. Then I recalled another of the laws of the Universe: The Universe will go on without you, dumbass.

I suppose that is so. After all it was here first. We're all just visiting a bit.

With great effort, I pulled myself out of the doldrums. I went over to Wallyworld after Mass to buy coffee and some other odds and ends. I was feeling pretty good. Saw a portable ice machine, and envisioned myself on the deck plopping fresh ice cubes into my beverage of choice. I could almost smell burgers cooking on the charcoal grill, and the gentle aroma of wing sauce wafting past me from the kitchen.

Yes, life was good. Keep that chin up! I told myself.

I turned down an aisle and found myself in front of the incontinence supplies. Depends underwear for men. Various underwear pads. (They call those pads "guards." I think it is so men can imagine them as a sort of offensive line protecting the star quarterback. It's a lot better, I suppose, then realizing they are there to keep you from earning a new nickname: Dribbles.)

Too much reality. Far too much. I stood there looking at all the products. There's a pretty impressive collection out there for dribblers and soon-to-be dribblers.

And yet, that dose of reality calmed me down. Yes, there are some unpleasant days ahead.

So what.

I will just find myself something else to dive into and I'll deal with what comes. I've spent 56 years doing that and it has worked out pretty well so far. I have a knee that I shouldn't be able to walk on and I've done thousands of door-to-doors on it. I am deaf, but I can hear again. I'm ugly and ...well, okay, that is what it is.

So sayonara. Signing off for today.

Sign me,

Yer pal, Mr. Dribbles...

* * *

Fringeville #104, April 26 2014

Opportunity

"...let me 'splain this to you, Lucy..."

It struck me the other day that cancer presents me with opportunity.

What on earth does that mean?

Let me 'splain, Lucy...

I have faced my mortality just one other time. In 2002 I had a major abdominal surgery. There were just a handful of hours from the time I went to the doctor's with a nagging pain in my side to the moment I was wheeled into surgery to remove a dangerous but benign tumor on what was left of my appendix. I found out later that prior to surgery the doctor told my wife it was 50-50 whether I would survive. Fortunately, everything went flawlessly during surgery. But there was no time for me to prepare myself. No time to fix the many things in my life that needed fixing, to say goodbye properly to people, to even just be plain scared to death.

As they took me to the operating room, I remember thinking, rather dispassionately, "...well, this might be it." My heart didn't so much as skip a beat. There was simply no time. I was on a rocket right to either recovery or eternity and there wasn't a damned thing I could do about it. That's no way to leave the world, but it is what many of us face. We're eating wings today, and they're being served at our funeral brunch tomorrow. (Note to my family:  When I die at the ripe age of 106, it's a wing buffet kids. Hot, mild, Cajun, butter garlic, and y'all can pick one more flavor to round out the selections. Just choose a noteworthy sauce. Nothing artsy-fartsy. Designer wings are an abomination. Then make sure the Beatles "Birthday" is playing on a loop. Mourners must throw their chicken wings in the air and take a slug of Guinness every time they hear, "...yes we're going to a party, party ...yes we're going to a party, party..."  Damn the torpedoes and go for the gusto. I want people going home saying, "...well the S.O.B. was a helluva lot more fun dead than alive!" )

(Note from my wife: NOT HAPPENING)

But I digress ever so slightly. Back to this bizarre little narrative I've started...

A few days after my emergency surgery, when I'd been weaned off the really good painkillers, I had a full-blown anxiety attack. I realized I'd just peered over the edge of the abyss. The great beyond. The hereafter. It had beckoned, but I'd been pulled back. It scared the hell out of me. I treated my anxiety attack by calling my wife at home and asking her to bring me an old high school geometry book I had on our nightstand. I'm not a geometry fan, but my brain needed to tackle something other than eternity.

"You want what?" she asked.

"My geometry book. It's under a pile of Glimmer Trains."

"Why do we have a geometry book?"

"I don't know. For emergencies."

I knew my wife wasn't thinking, "What kind of emergency requires a geometry book? Does Pythagoras need help? Is the square root of two acting irrationally again?"

No, she was thinking: "Well, this was inevitable. He's freaking out."

She rushed the book down to me. I spent a few hours trying to solve the most basic exercises in the book with only mixed success. You see, as much as I love the concepts of mathematics, once I get past a little algebra I'm awful. I am the king of add, subtract, multiply and divide. But the book served it's purpose and I calmed down. I haven't had an anxiety attack since.

This isn't 2002. This isn't a major surgery out of the blue with my life in the balance and no time for goodbyes. No, this time it is a different sort of journey. Prostate cancer isn't a rocket ride. It's a sort of cancer Carnival cruise, one that meanders from port to port with a destination in mind, but not guaranteed. One where multiple captains fight for the helm, changing the ship's course without warning. At least, so far, the prognosis is good. If I do draw an unlucky number in the cancer lottery, I will have time. And that, folks, is where the opportunity lies. It won't be enough time ...in my experience there is never enough time ...but there will be time nonetheless to try and make some kind of difference in the world, however small. Time to be a better person for those who love me and to help them through whatever comes.

* * *

Fringeville #103, April 20 2014

...listen carefully; the Universe may be whispering in your ear

It is a poorly kept secret that often my bedtime reading is something related to astronomy or quantum physics. Not the down and dirty math and hard core science found in the trenches, but the high level stuff. Astronomy is my usual bedtime poison. I can read about expanding Universes, black holes and old riverbeds on Mars until I fall asleep with the book laying open on my face.

But some nights, I find myself reading about string theory, multiverses and the crazy world of quantum physics where particles don't have one history but every possible history. Where the aroma of your morning java may not have taken its usual more or less direct journey from the pot to your nose, but perhaps made a quick tour of the Andromeda galaxy first. Or was maybe here and on Pluto at the very same instant.

As I waited for the phone to ring, my arms trembling almost imperceptibly, my face draining of color, I found myself thinking about the quantum stuff because the name Cornelius Ryan popped into my head. Ryan was a World War II correspondent famous for writing The Longest Day: 6 June 1944 D-Day, as well as The Last Battle and A Bridge Too Far.

But the book I remember him most for was A Private Battle, written from secret notes he kept during his struggle with prostate cancer, a war he eventually lost. His wife, Kathryn Morgan Ryan, discovered the notes after his death. She journaled his war against cancer as well, and from what I have read, neither was aware of what the other was doing. Kathryn turned their journals into A Private Battle. It was an extraordinary piece of work that pulled readers into Ryan's long fight with a devastating disease.

I read that book decades ago, and I am not entirely sure how it came into my possession. It is almost as if it simply appeared one day on my nightstand. A gift from the Universe. An absurd thought, of course. More likely, I bought it at my church's annual summer Festival flea market. I had a habit of doing that each summer; I would just pick out a bunch of books that looked interesting, buy them, and bring them home in a small pile. Yet I don't remember picking that one out, and it was certainly an odd choice. I was in my late twenties or perhaps early thirties at the time, not an age group where prostate cancer is common. Also, as far as I know, there is no history of prostate cancer in my family.

I'd had one episode of prostate inflammation when I was in my thirties. It resolved itself on its own not long after a visit to a urologist. The doctor's prescription was: "You're a young married man. Just have lots of sex. Keep the pipes clean." (You can't make stuff like this up.)

He wasn't amused when I shot back a Rodney Dangerfield reply of: "But Doc, sex scares me. It's dark. I'm alone."

So anyway yes, logically, it was probably the flea market that brought the book into my life.

Probably.

Or maybe, just maybe, the threads of the multiverse crossed for a second, and the book fell out a parallel Universe and quite literally, it seems now, into my lap. If that had been the only message the Universe sent to me about prostate cancer, I'd likely have forgotten about it.

But there was more.

In June of 2008 I began writing Water's Edge. The short story is about a man terminally ill with prostate cancer who decides to meet death on his own terms. I was drawn deeper and deeper into that story with every clickety-clack of my keyboard. If one is allowed to have favorites among their own works, this was one of mine. When I finally finished it, I remember thinking: "Well, where the hell did THAT come from?"

The phone rang. The biopsy results. The call I dreaded.

When I'd had my biopsy a few days earlier, I'd asked my urologist when the results would be in.

"It will probably be Friday, but there's a chance they'll have them on Thursday afternoon. Just call the office."

"They'll give me the report over the phone?"

"Anyone in the office can give you the report if it's benign."

"So," I said flatly, "My tipoff is if you have to call me back."

He paused a bried second and says, "Yes, that's your tipoff."

The biopsy itself was a piece of cake. That was because I was smart enough to research it and ask to be sedated, which required it being done at an ambulatory center. The other option was simply having it done in the urologist's office while wide awake. The biopsy would involve an ultrasound probe delivered up the rear entrance and then a dozen jabs through the wall of the rectum to withdraw thin cores of prostate tissue. In my reading, the best thing anyone had to say about the procedure was that it was like having a rubber band snapped. In your butt. Over and over. No thanks. When I was a kid I didn't like a towel snapped against my butt in the showers after gym class. I certainly didn't want anyone snapping anything IN my butt with me conscious at the time.

I was with the nurse when she called to set up the appointment. "Thank you," I said after she finished the scheduling call. "I have no intention of being awake when I have telephone pole shoved up my backside to harpoon my prostate a dozen times."

"It's not a telephone pole," she laughed softly.

"Maybe not. But what do you think a urologist would do if he was in my shoes?"

"Exactly what you're doing. Any of them would."

The day before the biopsy I started taking a particulary gnarly antibiotic called levaquin, which has a bunch of interesting possible side-effects, including tendon ruptures. It was only a three-day course, but among my other genetic blessings is osteogenesis imperfecta (OI). OI affects bones and connective tissues. Fractures are common, and I've had a number of them. But I've also blown out the patellar tendon in my right knee as well as partially tearing an achilles tendon. The powerful antiobiotic was necessary because of the path the urologist would take to do the biopsy. (See the note above about telephone poles and harpoons.)

The biopsy went well. I had no pain, but for about week I would have the distinct feeling I was constantly sitting on a softball. An odd, odd feeling indeed.

I picked up the phone and the doctor greeted me. I immediately fired off a list of questions:

What was the Gleason score? ...7
How many cores were positive? ...9 of 12
In one side of the prostate or both?  ...both
What is next?  ...you're going to need treatment 

At that point I babbled a bit. I can't recall what else I asked or what he said. The call ended after I asked him if he believed in prescience. He paused, and I said I'd written a story about a man who had terminal prostate cancer and that I had no idea where the inspiration came from. Perhaps the Universe was sending me a message. He paused again, and said the office would be calling Friday to schedule me for a CAT scan and bone scan and the call ended abruptly.

My face reddened with embarrassment. I could only imagine what he was thinking! I must have sounded like a nut case. And then I realized he had probably experienced a wide range of reactions from folks who'd just been told they won the cancer lottery.

But I am relatively certain no other patient will ever tell him the Universe lent him a book and then sent an early prostate cancer warning through a fiction project. It is these weird little quirks in the way I think that set me apart (and probably explain why I didn't have my first date until I was twenty-two).

* * *

Fringeville #102, April 12 2014

It's yours, free, if you just take it and leave!

What do I know about PSA? That's a teacher's union, right Doc?

Sometimes it's the phone calls you make, sometimes it's the phone calls you take. This time it was both.

Let's start with the call I made.

The woman who answered the phone at the doctor's office had a very, very pleasant voice. Cheerful, in fact. The perfect voice for answering incoming calls.

"How can I help you?"

"I'm calling for my biopsy results."

"Your name?"

"James O'Meara."

"Your date of birth?"

I gave it to her.

"Do you mind holding? I'll see if they came in."

I waited, and as I did so my mind wandered back to the things I had left to do that day and over the coming weeks. For the day, I was on my lunch and had a pile of work to get back to after the phone call. For the immediate future, there was a political campaign ahead. I had filed my petitions to run for Republican State Committee earlier in the week (the day before my biopsy, in fact). I was anxious to see what ballot position I would draw later in the month for the Primary Election.

Then my mind focused on the following day, one I was looking forward to. It was one of my days to pick up my grandson at daycare and drive him to school. We would have a half hour in the car together, and I would use every moment to the fullest. I would recite the name of every street we passed and we would play our "lunch game." The game works like this:

"What did you eat for lunch, James?" I ask. (My grandson is the third in a line of James O'Meara's ...I started a dynasty.)

No answer.

"Did you have elephant soup?"

"No."

"Alligator toes?"

"No."

"Snail soup?"

"NO."

"Zebra gizzards?"

"NO!"

On and on we go until he has a grin the size of Oklahoma.

These half-hour trips are precious to me. On this particular Thursday afternoon, March 13 2014, I was also thinking about the route to take on Friday when I drove my grandson to school. He likes me to change things up, and always asks to go "a different way." It was becoming a challenge because there are only so many ways to go from one end of Pittston to the other.

"Mr. O'Meara?"

Oh, but her tone had changed. Softer, almost a whisper.

"What number can doctor call to reach you?"

That was it. Bang. Zoom. My life had just changed, and I knew it.

I gave her my mobile number and sat at my dining room table, waiting for his call.

"Well," I sighed to myself, "You finally get yourself in a race you might win and then you go and get cancer."

* * *

The first indication something was amiss started the previous autumn. I was working two part-time jobs. One of those jobs was for a national retail chain, where I was a home improvement sales consultant. That's a fancy way of saying I sold hardware, lawn and garden goods, and a host of other items. I applied for the job strictly for the challenge. I was a middle-aged deaf man with bilateral cochlear implants which restored my hearing. I wanted to see if I could walk up to total strangers, engage them, and learn to sell. I wasn't a great sales consultant as far as numbers go, but in the time I was there I began building a core of customers who would come looking for me when they needed something. It didn't pay well, but I had a blast. It was a job requiring me to be on my feet all the time. I liked that aspect of it, once I got used to it, because it kept my butt from growing so large it needed its own zip code.

I started the job in August of 2012, and for the first year things were fine. Then, as the seasons changed and the colors of autumn emerged in 2013, something odd began to happen as I worked. One minute I'd be fine, and the next I'd get an urgent call from Mother Nature that the dam in my bladder was going to burst. I would zip off to the men's room, answer her call, then zip back to the sales floor. At first this happened maybe once a shift. As time went on it happened more often. Usually it wasn't a big deal because frankly we weren't all that busy. But occasionally a scenario like this would play out:

"Hello, and thanks for coming in to visit us today. I'm Jimbo. I see you're thinking about a lawnmower,sir."

"Maybe."

"Can you tell me a little about your yard?"

The customer would start talking about the size, terrain, etc. and suddenly an urgent message would be sent from my bladder to my brain: "Jimbo, wrap this up. The tank's full."

But of course, I couldn't wrap it up. I was just getting started.

"How does this electric start thingymabob work?"

I would start answering the question, and the others that followed, and a new message would arrive from below my belt line: "Jimbo. It's me. Your bladder. Maybe you missed my last call. Remember the movie 'A River Runs Through It?'  Well, in about 30 seconds that's gonna be your pants."

Panic!!!

"Let me go see if we have these in stock in our warehouse!" I would blurt out, then hurry off.

Of course, we had a ton of mowers in stock, but once I was in the warehouse I could make a dash to the men's room, tap the kidneys, and go back to my sale.

Occasionally, though, it was difficult to peel away. When I said I wanted to check stock, my customer would stop me and ask even more questions. Usually it was just one or two, but occasionally someone put me through the retail version of the Spanish Inquisition. I would stand there, cross-legged and spit out the answers. On a couple of occasions I came within seconds of saying: "Buddy it's yours, free, if you just take it and leave right this second."

Sure, I'd have been fired. But I'd get to pee, and at those particular moments in time all that mattered to me in the entire Universe was peeing.

I suppose I should have been alarmed, but I simply put it down to getting older. I felt great otherwise. My bladder was just a little excitable.

When my other part-time job became full-time with benefits in December of 2013, I left my retail job. I also made a mental note to see my primary physician sometime after the holidays. I hadn't been to the doctor in more than two years, largely because for much of that time I'd had no health care benefits. When I finally got limited healthcare benefits in January 2013 from my retail employer, my schedules were insane and I put off scheduling an appointment. The full-time job as "the office guy" for a local shoe store offered a lot of flexibility. I could finally make an appointment and get a good once-over. I had routine blood work done in early February 2014 and on the 13th of that month I finally found myself in my doctor's office waiting to be scolded over my cholesterol levels and for putting on a few pounds.

"Well," he said, "You're due for a colonoscopy but there's something else we need to look at first. Your PSA rose from about 1.8 to over 6. I'm going to refer you to a urologist."

And with that, my happy race to heck in a handbag began.

* * *

Fringeville #101, April 11 2014

A quick note to my readers (both of  you) that I'm going to begin writing about a journey I recently began. I know where I want it to take me. I know where I hope it takes me. But there are no guarantees, just likelihoods. And I'm not sure if I have the courage to write about it, but nevertheless I'm going to try.

The first installment will post shortly. The working title is: I'll give it to you free if you just take it and leave.

It's not what you expect. Trust me on that.

Jimbo

* * *