New Challenges

Real brief: After the recent MRI’s and bone scan, consultations with a urological oncologist and a radiation oncologist, and a conference between these two, I’ve decided to go for the course of radiation. How long this will take, when it begins, whether or not other therapies will be involved…too soon to say.

Later this week I’m scheduled to go for a “CT Simulation,” where they do scans to get the lay of the land and figure out where to shoot the beams for what length of time and for how long.

I don’t anticipate this being really horrible or terribly time consuming. No special diet, injections, or what have you. Probably just the usual amount of dignity theft that has become so common to me over the past year.

Mystical Powers

At a certain point after being diagnosed with cancer you get over the initial shock. You do your medical stuff, think about your cancer, do the regular stuff in life, and, if you’re able, just live. And as you recover between treatments or surgeries or whatever and kind of get back to routines you make a discovery. You are in possession of The Cancer Card. Now The Cancer Card is not a physical, laminated, numbered card. It’s a concept like say, a poetic license. The Cancer Card sits in your most convenient pocket of anything you wear (or don’t wear for that matter) ready to be drawn with the all the speed and confidence that Doc Holliday used when he pulled a shotgun from under his coat at the OK Corral.

The first time I used it (the Card not a shotgun) was when speaking to a drone in a doctor’s office. Some test slides needed to be sent from the urologist’s office to the surgeon’s office for an upcoming consultation. And they hadn’t been sent because someone…forgot. And I was not pleased. As I made it clear that the slides must now be sent by courier at the urologist’s expense I pulled The Cancer Card for the first time: “This lack of attention to detail is unacceptable,” I snapped. “Like cancer’s not tough enough?” A tiny gasp in response. I calmly replaced the Card with the ease and grace of a Samurai slipping his Katana into it’s sheath as a solemn promise of overnight delivery was made. I chose to ignore the babbling apologies.

I had reduced a doctor’s office bureaucrat to jelly. No small achievement. She was all too pleased to do my bidding. I was stunned by this super power I had acquired. I began to think of ways to use it. I wanted further proof of its powers. I pondered its many uses and soon realized that I would have to show restraint by not using it for selfish or evil goals.

The restraint lasted all of a couple of days. As Pam, Dan, and I sat watching TV on a rainy evening I got a powerful hankering for a Slurpee. Real powerful. A cola flavored one to be exact. I sure as hell did not want to slide out of the recliner, put my shoes back on, find the car keys, and drive the three blocks in that weather for a damn Slurpee. But if I could get Dan to do it that would be so much better.

“Dan,” I asked, “Would you mind running out and picking me up a Slurpee? Get one for yourself as well!” He fixed me with a stare.
“Now?” he said.
“Yup.”
“In the rain?”
“Yup.” I made my move and whipped out the Card faster than the devil himself could snatch a sinner’s soul. “I’d really like one. I have cancer.”

Shocked at this bold move and perfectly aware that he had been outplayed, out-maneuvered, and out-gamed Dan simply said, “OK I’ll get you a Slurpee."
He sighed, shuffled to the door, stopped and turned towards me. "You’re going to keep doing this aren’t you?”
“Yup,” I said, “Count on it.”

On Language

A fellow a lot smarter than me once said that when you ask someone how they are doing as long as their answer does not include the words inoperable, incurable, or indicted they are basically OK.

Much has been written on language and sickness and it’s been written a lot more eloquently than I could ever do. In my own experience I’ve noticed that the term “cancer patient” is much preferred to “cancer victim,” or “cancer sufferer.” Cancer patients are spoken of as fighters or survivors.

I think that the words that tend to give most of us a bad case of the whips and jangles are the ones that are related to the medical profession. A good deal of those words are descriptive and scary like hemorrhage, arrest, blockage, or terminal. And let’s not forget that old classic, the one that always brings the crowd to its feet, cancer.

Beyond these obvious ones are the gems that so many of us have learned from the media, the words that started as medical industry jargon. All industries have jargon and all jargon should serve the same purpose: quick, direct, concise information. Jargon is no more than a shorthand borne out of the necessity to get an established idea or concept across quickly. I suppose if one saves time talking and explaining one can devote those precious seconds to doing something useful.

A problem arises if jargon loses its specificity and begins to obfuscate rather than illuminate. Corporate business jargon with its “action points,” “actionable items,” “human resources,” and “memorandums of understanding,” is the best example. Here jargon is a shield to hide behind. Jargon assures that no one knows what anyone else is going on about and therefore it’s tough to lay blame when things go kablooey.

But medical jargon is usually damn direct and based in immutable science, the meanings pretty well chiseled into stone by use in popular media for decades and decades. I don’t care who you are but if you’re walking the corridor at some hospital to go visit old Uncle Sheldon after his hernia operation, and you hear behind you the nearing sound of running feet and a rattling cart of equipment while someone shouts, ”Room 307 STAT!” you will slam yourself flat against a wall in a heartbeat as that cart roars by.

As I met with an oncologist the other day and discussed different “protocols of treatment” (means what we can do for you) that may or may not be “curative” (means might make you better) and its ultimate impact on my “quality of life” (just how fucked up things will be for you for years to come), I realized that the very mention of these words in terms of my well-being was horribly sobering. For this set of jargon does not come into play if things are clear cut.

Go the emergency room with a broken bone and medical jargon is not spoken. Actually a version of craftsman or woodworker jargon comes into play: “We can FIX that, SET it, IMMOBILZE it, SPLINT it.” No vagueness there. They could be talking about a chair leg.

So if the expediency of medical jargon transforms to the vagueness of business jargon watch your ass. And the phrase that put it all together for me, the phrase that told me that they were not sure how to proceed, that they had possibly run out of pages in the playbook was when the doc, after detailing several courses of action that would at best maybe, just maybe help cure me, brightened, looked up from his papers and said, “I’ll be right back! I want to check if you qualify for some Clinical trials!”

Clinical trials: Those are things they do to try out new stuff. Because the old stuff wont necessarily work for you. That’s where they use placebos so you might not be getting the stuff you hope for. That’s where even if it doesn’t work out for you perhaps some other poor soul is helped out down the road because of the data you generated. And I guess they hope that the warm glow you get for being so selfless will improve your quality of life.

The Rationale Behind This

At various times during this ordeal (is that the right word?) I have been told to start a journal. The advice has come from websites, friends, spouse, articles, blogs, and so on. I am not the kind of person to sit and scribble or type about what I feel or think. I'm simply not that patient. Nor do I think it's all that captivating .

But over the last year I have sent emails to assorted friends, co-workers, relations and such in an honest attempt to keep them updated with the latest on my health. I did this for several reasons:
Folks are interested and many of them will never ask, truly ask, about my condition.
It kept me from having to answer the same questions over and over from those who felt free to ask.

After my surgery in May there was really nothing to report. And when I did have something to report I hesitated to send the info out. It struck me how unsettling it must be to go to work in your usual work mind-set, turn on the old 'puter, scan the in box and have your consciousness tripped up by an email titled "Cancer Update," from buddy Jeff (say, wasn't that all done and over?). I mean, what do you do when you get an email like that? Do you read it first? Do you put it off? Do you watch a few videos, look at some funny pictures, and then read it? I think that's asking a lot from people first thing in the morning.

So I figured that if I put my email writing skills into this thing and give out the address to those who wanted it, well, they can check in when they want when they are good and ready. Better for everyone involved.

Wherein We Join the Show, Already in Progress...

Friday March 13, 2009 started the second chapter of my life with cancer. That's the day my PSA test showed its third increase in 9 months.

Let’s review: When I was diagnosed back in February of ’08 I was under the impression that the cancer had been found, would be removed, and I would move on. I would heal, slowly. At least that was the picture that was painted by conventional wisdom, statistics, doctors, nurses, friends, and the internets. But as the months wore on, and the regular PSA tests were done, a pattern emerged: the numbers were going up instead of going down or staying steady.

I had crossed over to the hall of mirrors where so many with cancer reside. It is a world of counter-intuitive information, contradictory facts, rules that are iron-clad until they aren’t, and polished marble floors that turn to quicksand just as you get a foot hold. In the past year I claimed I was living part-time in cancer-world. It seems my commutation ticket has been punched and while I still live part time in cancer-world now I own a condo with a fully stocked fridge so I can stay here longer.

Here’s the bio lesson: When you have a prostate it emits Prostate Specific Antigen (PSA) all the time. The measurable amount is low if nothing is wrong or high if something is amiss. Though that is not always true. But mostly it is. Except when it’s not. An infection, an injury, or cancer cells living there can make it rise. It is notoriously unreliable for detecting cancer but it is the only test out there. Basically: low number good, high number bad…except when it’s not. Now if you remove a prostate the PSA test becomes extremely accurate because the ONLY way the number can rise is from the presence of prostate cancer cells. But if you removed a prostate, and there are prostate cancer cells detected…uhhh…where are they?

Now follow this one: When they took out my prostate they found that the cancer was completely contained within the prostate, encapsulated they said, showed no signs of spreading. Good news, right? Not so fast. If the PSA had NOT gone up, yes good news. But it HAD gone up…so where exactly are the cells if everything was contained?

But if the cancer HAD NOT been contained and showed signs of spreading (Bad news right?), and the PSA went up, well they know where to look for the remaining cells…in the area where the prostate used to be, essentially these cells are left-overs. This is logical. Easy to treat.

So to recap: A clean pathology in May of ’08 is a good thing until it isn’t in March of ’09 and bad news is sometimes good.

So what do you do? You scan the bones for metastases; you scan the pelvic region to look for lesions. And if you find something ( that’s bad news, right?) you aim radiation at it, maybe a few other things, and you’ve got a good chance of a cure.

BUT…if the doc comes back with your reports with the “good news” that your bone scans are clean and show nothing (maybe a tad of arthritis here and there), and your MRI’s are clean and show nothing, this news that should normally be greeted with a sigh, a sheepish smile and a mumbled, “thankyougod,thankyougod,” is particularly alarming. Because what you’re being told is that yes, you have cancer, we know it, see the numbers prove it, we aint wrong…we just don’t know where it is…but it’s there...yup.

Objects in the mirror may be closer than you think…what you see is not necessarily the truth…or maybe it is.
So where am I now? Tuesday the 31st I see a radiation oncologist to decide a course of action. Probably radiation targeted at the area where the prostate was. How do we know that’s where the cells are? Well we don’t…we’re guessing. And that’s the best we can do. Maybe add in some hormone treatments, just not sure at this point.

I anticipate a major disruption to my life for treatments and side effects. Will it work? It might…but then again it might not. After that? We’ll see.