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Tuesday, August 19, 2014

Fringeville #111, August 19 2014

...serves me right.
I said I'd be back soon ...and this time I really was.

I mentioned in my earlier post that I would get my PSA results before I went to Philly to see my doctor. That was the plan and a marvelous, splendiferous plan it was. I'd go to my usual lab, have the blood drawn today, get the results early next week, and take'em with me. And read them ahead of time, of course.

So I schlepped down to my lab today and handed in the sheet for the blood draw.

"We can't do that here," I was told.


It turns out it is an ultra-sensitive PSA test. Why "ultra-sensitive?" Because, with no prostate, my PSA should theoretically be non-existent or nearly so (less than 0.1 nanograms per milliliter, or the PSA equivalent of a reality TV star's IQ). We're looking for mere smidgens of smidgens of smidgens of PSA here, kids.

And my lab doesn't do the smidgens of smidgens of smidgens of PSA tests.

The nearest labs that did, and which took my insurance, were in Scranton or Hazleton. Scranton is closer as the crow flies, but pure hell as the PennDot flagger's flag flies, so Hazleton it was.

I found the lab and got the blood drawn. I asked if I would be e-mailed a copy ASAP.

Nope. They're gonna snail-mail me a copy.

Oh, Joy!

"When will I get them?"

"After the doctor does. The blood goes from this lab to Philadelphia, and then to California. You'll get the results later."

This meant that from the moment the blood was drawn until next Thursday I will be in the very place I was trying to avoid: THE DARK.

On the upside, at least my blood is seeing America. Happy vacation, corpuscles! Stop in Memphis and have some barbecue. Say hello to the antibodies for me. Miss you guys.

Now my family will be forced to watch me grow ever more manic with each passing day as I dwell on whether the ol' PSA is undetectable or if I will discover I have "biochemical failure." That's a fancy way of saying my prostate cancer has taken up residence somewhere else and is happily churning out PSA ...and multiplying some nook and cranny of my body.

Even though that is highly unlikely so soon after surgery, this will be the torturous game I have to play for a long, long time. Blood draw. Anxiety. Relief. Or "biochemical failure."

So my strategy is this:  I am going to focus on getting shit done. (Sorry for the cuss, but it is the only accurate way to put it.) If it turns out that I am the equivalent of a milk carton with an early expiration date, I will make a helluva lot of milkshakes before this ugly-ass carton goes bad. (Yes, a truly terrible metaphor, but I get a pass on that today. And at least I didn't dangle a damned participle.)

Ciao for now.

Their stomachs growling, the wings cooked. Sorry I couldn't help myself. 

* * *

Fringeville #110, August 19 2014

I'm a little hard to live with these days...

I said I'd be back soon. Soon is in the eye of the beholder, and this for me is soon.

It's been hectic since the last post on July 20.

My church had their annual Festival. It's a big commitment on my part. I practically live up there from Thursday night through Monday morning. When I had surgery in May, I was concerned whether I would be up to the demands. I have to say that I was probably in better physical shape this year than any of the last several, despite being just two months out from surgery. For one thing, my weight is down, so tackling the hill to the rectory from the grounds several times a night wasn't as big a problem. It's amazing what being a tad lighter does for your knees.

Anyway, I not only got through the Festival without issues but it was one of several things which lifted some of the darkness evident in my last post. Being involved in stuff does that for me. It keeps things in perspective.

I also had a chance to speak at a local Rotary about my cochlear implant experiences. That was uplifting as well, because there is always someone in the room that can either benefit directly from a cochlear implant or has a friend or relative who might.

I also had a chance to connect with a number of friends who are facing challenges. When you get cancer, you tend to turn too many thoughts inward. But I know people whose lives have been turned upside-down. I don't know how they cope with it.

Yet sometimes, turning thoughts inward seems unavoidable. I'm getting my first blood work done in preparation for my follow-up visit to Philly next week.  I am hopefully going to have an undetectable PSA. And hopefully that will be the case from now on.

But cancer is never about certainties. There is a good chance that somewhere in the next decade, my PSA will start to rise. If it does, depending on how soon and and how quickly there will be decisions to make. Decisions which I don't want to have to make. And that is why every PSA test is a source of anxiety, especially in the early going after surgery.

One of the downsides to all the research I did is that I will see that test before the visit. I know what to look for. If I like what I see, it should be a nice day in Philly and maybe a cheese steak downtown. If I don't like what I see, that trip will be one I dread.

But I am here. I am still kicking and kicking hard. I am somewhat impossible to live with right now (just ask my family) but over time I hope to become more my old self.

In the meantime, there's stuff to do. Lots of it.

But ..ahem ...I'll be back soon. Promise.

* * *

Sunday, July 20, 2014

Fringeville #109, July 20 2014

Randomness with a purpose...
My apologies to anyone who expects my prostate cancer blog posts to progress in a linear fashion, moving from step to step in a clear path from point A to point B.

It ain't happening that way, folks, because it's not how I am living it. I suppose the purely medical side of all this is doing that, but that is totally and completely separate from how this whole thing is affecting me as I experience it day-to-day. There is a purpose to all this. I will get to point B, whatever the hell it is. But I am going to take a lot of side journeys. Be warned.

I have had to take a pause. I am still in that pause. This is just a post  to say yes, I am still here and yes, there is a lot more to say about this journey.

But I am in mourning.

I didn't realize it at first, but in reading some of the other posts from prostate cancer patients on the web I learned that the underlying darkness I have been experiencing is in no way uncommon. And then I read a post from a man who put it more or less this way: "I am in mourning for the man I once was."

When I read that, it was a revelation of sorts. The man I used to be ceased to exist on May 14, 2014. The surgery was a success. Most of the news was good (but some was murky, as it always is with a cancer). I recovered physically very quickly. But something was clearly not the same. My family noticed it. You're not the same as you were before the surgery.

Ah, but how right they were about that, despite my denials!

Because, you see, the man they know no longer exists. He is gone. A different fellow is here now, one I recognize well at times and one who is at other times a total stranger. Some men simply cannot handle the loss of self that often comes with prostate cancer. The suicide rate for men after a prostate diagnosis is about twice what it is other men. Heart attack deaths are also higher.

Strictly from my own perspective, it is not any one thing. It's not the vanishing of the sexual side of life. It's not walking around wearing piss guards so my pants aren't stained. It's not peeing on shoes. It's not the spike in blood pressure every time an ED ad runs on TV, or a radio commercial hawks prostate supplements.

It is all of that. All of it and more. It is a sense that what makes a man vital has been robbed by disease and in its place is an empty fellow who mourns what he once was. A man who looks in the eyes of people he knows and wonders what they are thinking. Can he raise the flag? Why is he still losing weight? Poor bastard, probably dribbles on his shoes. 

I see that at times. I do.

So yes, I am in mourning. But I consider myself lucky. I have myself so involved in so many things that I don't have the damned time to contemplate eating shotguns or aiming my car at an oncoming chicken wing delivery truck. But I can imagine all too well how some men simply cannot deal with the darkness that comes into their lives at some point after diagnosis and treatment of prostate cancer. It is there, all the time, and there is no telling how long it will last. A month? A year? Forever? Even when you think it is gone, it returns without a warning. In my case, out of nowhere I get hit suddenly with a tremendous wave of sadness; of loss. It is never the same trigger. Perhaps it is a familiar stretch of road.. Or a picture I find from before the diagnosis. Or maybe it is nothing at all that ushers in that crippling wave of sadness.

My own therapy at this point is to work even harder. It is the only way I know to escape. I have to pour myself into something. I might even pick up a 3rd shift job somewhere. God knows, I might as well do something useful instead of laying in bed staring at the ceiling and I can use the dough.

So there it is. There's the latest update. It is not eloquent or polished. Sorry if it is darker than you, dear reader, may like. And like much of my new life, it is non-linear and meandering. So be it. I will go with that flow, wherever it takes me.

Back soon. Promise.

* * *

Sunday, June 15, 2014

Fringeville #108, June 15 2014 inability to dress well is apparently hereditary...

(If you have read this before, apologies. But I'm compelled to run it again, because I cannot pass a body of water or a boat on a trailer (or in a backyard "drydock") without thinking of my father. Had Melville written Moby Dick with my father as the lead character, it would have been a short work indeed. "Call me Wally. I joined a crew to hunt the great whale. But I sank the boat in the harbor." The End)

My Dad didn’t have much luck with boats.

His idea of a perfect day would have included an excursion up Maryland’s Little Choptank River in a small boat with a woefully underpowered outboard motor. There would have been a wire net for crabbing, and perhaps a fishing pole, but they would be optional. The boat was the thing. He believed he was in his element on the water, and on those extremely rare occasions when he actually got there and nothing went wrong, that seemed to be true. That hardly ever happened because, as I said, he didn’t have much luck with boats

Most but not all of his disasters happened in Maryland. I remember as a child being with him at a marina on Taylors Island on a bright, sunny day. He’d borrowed someone’s trailer so he could launch “the boat.” The water was murky, and he enlisted the aid of someone in a Gilligan hat to guide him as be backed the boat down the ramp. He put the car in reverse and eased the trailer slowly down the steep ramp as Gilligan beckoned with his hand and shouted “a little more!” every few seconds. This mantra was repeated over and over until Dad backed the trailer right off the ramp. Thick metal makes an odd sound when it snaps. The boat floated. The broken half of the trailer sank. I have been wary of people in Gilligan hats ever since.

Another disaster visited when the remnants of a tropical storm raged across the Eastern Shore. He went to the marina before the storm came to make sure “the boat” was secure. He tied the knots perfectly…the lines would have to break for the boat to come free. He didn’t, however, account for the abnormal tides.

The morning after the storm he left to check on “the boat.” He was gone a few hours, which wasn’t a good sign. When he returned, he had tears in his eyes. My mother asked what was wrong. “I sank my boat,” he said, choking on the words. He didn’t leave enough slack, apparently. I never had the heart to ask if Gilligan had anything to do with it.

The boat spent a long time out of water after that being “repaired.” Our dry dock was the driveway. I remember working with fiberglass patches and gradually making the boat worthy of the water once more. We were living in Woolford, Maryland by then and had a small dock on the property we rented. When the boat was launched…successfully and without Gilligan anywhere in sight…we took one of several uneventful trips up the Little Choptank. I wondered if the curse was broken.

A few weeks later, a junior high friend of mine picked me up with his father’s boat at our dock. We were going to his house for a day of BB guns and Beatle albums. It was low tide, and we got stuck on a sandbar. My father, sitting on the porch, noticed us struggling to get free in the distance. He decided to rescue us. We could see him hundreds of yards away in “the boat.” He’s started out for us and the motor must have stalled. He was bending over, trying repeatedly to re-start the balky outboard as the boat drifted and turned this way and that in the water. Meanwhile we worked ourselves free and began doing lazy circles on the river, wondering if he needed help. Finally we saw the boat had moved a distance up the creek, and knew he had started the motor. The boat was partially obscured by some marsh grass. My mother was on the bank in the distance, waving. We waved back and then continued up the river.

I learned the awful truth several hours later.

When Dad finally started the motor, the boat was facing the opposite side of the narrow creek. He shot straight across the creek, up the opposite bank, and flipped over backwards. He was trapped underneath for several minutes before working free. The boat sank again, of course, and spent more time in dry-dock once it was pulled from the water.

He gave up on boats eventually, but after he retired here in Pennsylvania he gave it one more stab. Things weren’t much different. I can clearly recall spending an afternoon on Harvey’s lake. It was a beautiful day. We were on the water for nearly two hours. The engine of “the boat” (a different boat by now of course…I lost track of what happened to the first) was dead.

On another occasion, I went to our old homestead in Harding to visit him. He had his own trailer now, and “the boat” was on it. He was about to hook the trailer up to his pickup truck. He asked me to come with him. “Perfect day for a boat ride,” he said. His eyes were alive, sparkling with anticipation. He bent over to resume the hitching. I watched, and frowned. Something didn’t look right. I spoke up, and was immediately silenced. “I’ve been doing this for years,” he said firmly.

We began the trek out of the neighborhood. I was in the passenger seat, looking at him as we talked. The truck hit a small speed bump near the edge of the development and Dad hit the brakes, slowing to a crawl.

Something caught my eye.

“Dad,” I said urgently.

He looked over at me. “What is it?”

“Look out your window,” I said, motioning with my head.

He did, just in time to see “the boat” passing us. It came to rest in someone’s flower patch. There were, fortunately, no casualties (other than Dad’s pride).

“I’ll pay for the flowers,” he told owner of the murdered begonias.

We dragged “the boat” back to the truck and hooked it up correctly. No words were exchanged and the rest of the boating excursion went without incident.

I am forever thankful Dad had no interest in aviation.

I miss him terribly. I know wherever he is he sits on a small boat on a great pond. The day is crisp and clear, a breeze is blowing gently over the water, and he is drifting lazily on the water.

Out of gas.
* * *

Saturday, May 31, 2014

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.

* * *

Monday, May 12, 2014

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)
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...

* * *

Monday, May 5, 2014

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...

* * *