NOW What Do We Do?

So the test results are in. The PSA level dropped. This is a good thing. It’s now about 50% lower than it was in April and about 80% lower than the March reading. It’s well below the threshold at which radiation therapy is started. Like I say, this is a good thing.

This doesn’t mean it’s all over, it’s done, and I’m cured. Cancer doesn’t work like that. I’ll go back in September for another test…and then again in another three months. And if the numbers stay low perhaps the time between tests will eventually stretch to six months.

The next question of course is why did it drop? Perhaps that’s best answered by a previous question: Why did it go up? The fact is there’s really no way to know. A whole range of answers could be suggested:
There was an error in the March test.
There was an error in the April test.
I lost weight.
I ate well.
My body is healing.
I have a good attitude.
I have good karma.

Or, like so much about cancer, no one knows. It just is.

Cancer is a process, not a finite point. All the physical changes and the treatments are permanent and unshifting; the state of mind and the disease however, ebb and flow. It is and will continue to be a balancing act: living well and maximizing healthy time while dealing with the apprehensions and uncertainties of the future. I think these past 60 days were a test drive for the way my life will run. The test went well. Much was done and much was learned.

This blog, which I started for myself as a way of codifying and clarifying thoughts, will continue. It’s helped me step back, take a breath, think. I’m not sure of the direction it will take in the future.

I have a few binders and notebooks that I use for storing cancer related research, notes, insurance info, records, and receipts. For the time being these will go on to a lower shelf in my office, a shelf that doesn’t see much action. They’ll keep my old, unused external drive and my extra cans of Staples Dust Destroyer company.

As much as I’m getting a sense of wanting to move on and just be away from Cancer World I suspect that’s never really going to happen. But right now and for the next few months there are other things that need my attention: There’s Father’s Day at Citi Field, kayaking if the weather ever gets warm, a 21st birthday to celebrate at McSorley’s, Rebecca doing standup at Caroline’s in July, briskets to smoke, trails to hike.

Getting away from Cancer World may be illusory, but in the words of Adam Savage of Mythbusters, “I reject your reality… and substitute my own.”

If I am not for myself, who will be for me? If I am not for others, what am I? And if not now, when?...Hillel

The Valley of Fire, Nevada

We returned from Las Vegas Friday, May 29th. It was in a sense two separate vacations: Las Vegas with all its attendant looniness: the strip, the casinos, the hotels, the tourists, the shows, the noise, and all the other stuff that makes Vegas, well, Vegas.

And the desert: With absolutely none of the above. It is a place I always wanted to see, and dammit, I saw it, hiked it, climbed it, and breathed it. I must go back.

After the decision to hold off on the radiation was reached I made up my mind to do what I wanted until the next scheduled blood test, which was this morning, June 16. It wasn’t hard to find things to do. What was hard to do was to concentrate on those things and get the cancer crap out of my mind. It’s a little like being on a high mountain road: you know that injury and death will be swift if you veer off the road so it’s best not to look over the edge…rather concentrate on the road immediately ahead of you. And that’s what I did. We saw 2 plays, ate fine food, spent time with family and good friends, took a vacation. The fun continued through my annual physical which revealed that my various cardiac problems are stable and all the tests were gloriously normal. I assume that my hinkey ticker took pity on me and decided to give me a break this year.

Dana Jennings, a writer and editor for the New York Times, publishes a semi-regular blog about his own prostate cancer experiences. He’s younger than me and has it way rougher. I am always dumbstruck by his wonderful writing and his ability to really nail aspects about this disease and all that goes with it. One of his entries concerned the non-stop blood tests and the people who perform them. He brilliantly divides the phlebotomist world into two camps: The pokers and the gliders. The gliders are the artists, the ones you barely feel. Their touch is swift, sure, gentle but not hesitant. I believe I had been batting around 1000 until this morning. I got me a poker. I felt that needle go in, sit in there for a while, and most assuredly come out. And when I removed the ball of gauze in the crook of my elbow several hours later, it was a nice, damp, red orb. I could have wrung it out and run a brace of liver function tests and had enough left over to check my cholesterol as well.

So now the wait. The key is to not get ahead of oneself in terms of imagining outcomes. I’ve envisioned all the scenarios: good results, bad results, more treatments, less treatments. None of the outcomes can be clearly envisioned or predicted. I’ve learned that cancer comes at you in ways you can’t imagine. Anticipation is a waste of time. I’ve also learned that you can’t forget about it and just go about your life as if nothing has happened. Because something has happened and you are not the same. Certainly in a physical sense as well as in your approach to and sense of your life.

For sixty days I have tried to put this all aside while I did what I wanted rather than what I had to. I found that during that time I could be having an extraordinary time, a time when I am in the moment, but cancer managed to crawl back into my view. Oddly enough it did not ruin things for me. I acknowledged it and got back into the moment. I guess I’m learning to deal with cancer on my terms. I’m learning to own it.

Off We Go...

The past weeks have been uneventful and I have kept my promise to myself to enjoy the time between tests. The next one is mid-June and results will determine the future plans. I've tried not to stress over it and have been keeping myself busy with work and doing the things I want to do.

Tomorrow we grab an early flight to Las Vegas for five days of r&r. We're planning on spending two days hiking a couple of state parks in the desert. The desert has always fascinated me and I've wanted to poke around out there for as long as I can recall. It was a last minute plan that came about as a desire for fun time off, cheap hotels and airfares, and an attitude of, "if not now, when?"

Some Poetry....

After a tough winter, springtime down in the Village. I think this really nails it.

Bleecker Street
by Philip Schultz

It’s a lovely June afternoon
and I’m heading up Bleecker Street
for a hazelnut espresso latte,
the kind made out of real hazelnuts,
not syrup, hoping it will empty me
of all my bickering ideas about love
and fate and immortality
so I can hear the fertile songs of spring.
Miguel de Unamuno—whose name
is impossible to say without smiling—
believed “self-love widens into love of all that lives.”
Thank God for Unamuno! For hazelnut lattes!
But the infinite archeology of my stupidity
prefers the charms of self-pity
to the equilibrium of self-love.
Perhaps these three Chinese girls
giggling into cell phones, lavishly spending
each moment of their youth, truly believe
the mountain of self has no top
and each breath is a reckoning with fate?
Perhaps these shiny boutiques, each
so resolute, so eager to please, are weary
of decorating the illusions of another century,
prefer the runaway slaves they hid in their root cellars,
their dreams of slaughter and deliverance?
Perhaps this beautiful blond woman,
screeching to a stop in a lilac Mercedes,
pursued by wailing police cars, finally
understands that it is not only for the soul
but for the mind that happiness is a necessity?
“Is the rich bimbo stoned or just stupid?”
an old man, radiant with rage, screams.
Perhaps everyone secretly admires
something momentous about himself,
with the mass and “inner life” of a cathedral,
in the tradition of the Spanish saints and mystics
who cherished the bliss of infinite sacrifice?
Perhaps this street remembers the loneliness
of war widows, the roll calls of absent names,
its first kisses on the corner of West Tenth Street,
the swooning confetti heat of victory,
the scalding springs of defeat? Indeed,
this street is a wave of advocacy
and streaming window peonies and tulips,
a fierce glimpse of history, an echoing
of nightly gunshots, a flag of black pigeons
flowing east toward the end of a continent,
a hunger for immortality, a tiny brusque city,
a bickering idea, a useless boutique,
a fertile song widening into a love for all that lives.

Music

A cancer diagnosis can be an intensifier or a concentrator of emotions. Sometimes, it causes bravery, selflessness, and courage to shine all that brighter. Other times it turns the volume up on anger, rage, and despair. These past fourteen months have seen my emotions whipsawed on a nearly daily, sometimes hourly basis. Tests, procedures, and decision making seem to generate the widest arcs of emotion. It’s at those times that I’m the most vulnerable, when a consultation or a test result can dramatically alter the landscape, the times when the distant and immediate future are fuzzier than usual. You realize that all that you know about getting by in life, your coping skills, are being pushed to the max.

For me, there is a component to this experience that is, in some ways, almost musical. Like a complex piece of music, your emotions rise and fall. The appointments for repetitive tests and consultations begin to take on their own rhythm. There is a beat to the whirrs, clicks, beeps, and grindings of the machinery that scans you. Each lab, each office, has its distinct soundtrack. There is percussion and there is a bass line and there is the passion. But a melody is rarely there. It is primal and connects with you on a very basic level.

Music is important to me. I can’t create it. I can’t perform it. I can listen to it and understand it. In fact I find some music prayer-like and holy in the way that it can bring me relief, solace, and hope. Some music will transport me or alter a mood in powerful ways. It has always been this way for me. I can get lost in all the levels of music: the melody, the lyrics, the instrumentation, the history, the artists. Getting lost in something other than the labyrinth of the medical world is something I often need. Some music does it for me. It can become my center. I can focus on a structure that seems to have its own logic, its own reason for being. Beats can be dissected, lyrics analyzed. When I find myself completely immersed in music I find that I emerge relaxed, more clear-headed. It is in some ways a meditative state or perhaps similar to a religious euphoria.

The music does not have to be cheerful, light, or deeply sad. If it works for me it just has to be what it is and nothing else. There may be a message in the lyrics, there may not be. Listening to the right music at the right time is not unlike entering a tunnel: all focus is at one point and the periphery is meaningless.

Lately, the Tom Waits song, “Come on Up to the House,” has become my default tune. It’s on a few of my playlists and works either at the gym or in the car. I’ve found myself selecting it after tests and procedures. Waits’ voice gets all the frustration, anger, and longing that so often accompany these visits. It’s structured like simple gospel melody and while the lyrics could be interpreted as pertaining to Christian life I think it could have a broader meaning as a search for centering when chaos surrounds you.

Well the moon is broken
And the sky is cracked
Come on up to the house
The only things that you can see
Is all that you lack
Come on up to the house

All your cryin don't do no good
Come on up to the house
Come down off the cross
We can use the wood
Come on up to the house

Come on up to the house
Come on up to the house
The world is not my home
I'm just a passin thru
Come on up to the house

There's no light in the tunnel
No irons in the fire
Come on up to the house
And you're singin' lead soprano
In a junkman's choir
You gotta come on up to the house

Does life seem nasty, brutish and short
Come on up to the house
The seas are stormy
And you can't find no port
Come on up to the house
(Chorus)

There's nothin' in the world
that you can do
You gotta come on up to the house
And you been whipped by the forces
That are inside you
Come on up to the house

Well you're high on top
Of your mountain of woe
Come on up to the house
Well you know you should surrender
But you can't let go
You gotta come on up to the house
(Chorus)

The Lure of Cause and Effect

Entering Cancer World brings you into contact with people, places, and things you may have fleetingly thought about but never really examined. Think of it as a trip to a famous place you know of but never saw up close, for real. A few years ago on a trip to Rome, I was walking through the forum, turned a corner and there in front of me stood the coliseum. This is a place that had been part of my life since I was a kid through novels, movies, TV, school, popular culture, on and on for decades. But now I was there. And while the look of the place certainly matched what I knew, the reality was different: The angles, the colors, the quality of the light, the spatial relationships, the sheer scale of it all was unexpected. So it is in Cancer World.

You enter Cancer World with perhaps a rudimentary understanding of the vocabulary, a whole lot of fear, and a yearning to find out what’s going on. The scope of what you don’t know is staggering. You pick your way through, you learn some things here and there, and like a total immersion in a foreign culture, you begin to get the hang of things. You don’t have a lot of answers but you get more skilled in asking questions.

One of the areas you’re bound to encounter at some point is the neighborhood of Alternative Therapies. I always figured that this is what you used after everything else failed. So imagine my surprise when a friend, a dear, dear friend who I have done business with for quite a few years told me of a special drink that did wonders for cancer. This is a very smart and canny businessperson, caring, and open. And I was being given THE ANSWER.

It seems people who had been diagnosed with cancer, after daily drinks of the potion for six months or so had seen stability or remission. The elixir contains:

The goop inside about a two inch section of aloe leaf.
About five ounces of fresh squeezed orange juice.
A half shot of tequila.
A spoonful of honey.
You throw all this in a blender, whip it up, and drink it down.

Of course I researched the hell out of this and found a reference to the recipe on a bulletin board from 1998. That version has you making quarts of the stuff with greater quantities of the ingredients and drinking a few spoonfuls every day. It also says you can use vodka or any other spirit. Hard scientific data? There is none. Some legitimate cancer information sites (the American Cancer Society for example) examine the purported benefits of aloe and come up with lots of anecdotes, some warnings, but no hard and fast research. Has there been no research because it simply doesn’t work or it’s not being taken seriously, or is something more sinister afoot? I suppose one could make the argument that it’s not in the best interest of big pharma to get behind a remedy that can be mixed up at home with easily obtainable and cheap components. The costs of years of research and trials would never be recouped.

The question: Why is there an urge to always try and solve the most complex of problems with the easiest and most accessible solutions? No, this is not Occam’s Razor which states that the simplest explanation is usually the best one. The elements are too random.

Implied cause and effect helps bring order to what I see as the chaotic and random nature of our lives. It is much more comforting to believe that complex conspiracies of government cabals and organized crime assassinated JFK than some single whack-job like Oswald. For if we accept that the life of the leader of the free world can be cut short by one random maniac what does it mean for our own safety and security?

I think we often spend too much time searching for the why instead of the how. And isn’t that what faith and religion are all about? Lately I seem to be trying to understand the is, the now. That’s all I can seem to connect with. I guess that it’s to be expected that at some point in this whole experience of cancer you look up and say, “Why me?” The simple answers: It’s God’s way, it’s karma, this is where you’re supposed to be, you ate too much of or not enough of this, it’s genetics, it’s your attitude, and so on just don’t cut it for me. The answers and the attendant explanations of the answers just ascribe too much misdirected blame. According to Cancer Care there are 103 different types of cancers. And while only a scant few are directly attributable to some external cause (like tobacco) the rest are startlingly random. While there may be correlations or tendencies between behavior/diet/health choices, etc. none of these taken in context of our daily experiences are strong enough to point to a direct cause.

And that brings us back to the randomness and chaos of our lives. And where does that leave us? For me, I’m trying to put a little more emphasis on the now. The past is done and I’m less assured about my future. I’m learning to deal with what is, what I can see, where I am.

And yes, I did try the potion and besides the okra-like sliminess of the aloe, the honey (which I have always detested), and cheap paint -thinner-like tequila…it was pretty good. But then I like freshly squeezed orange juice.

Failure to Launch

"No, Linac, I'm not vanquished yet. But we will meet again, I'm sure."

On Monday I headed across 68th street to the hospital for a PSA test. This was to be my last one before radiation and was being used to set a baseline. The test before this one, taken exactly one month ago to the day, was the one that started the alarms ringing. The numbers had increased dramatically and were above the accepted threshold where you begin treatment.

Tuesday morning I drove over to the radiology office for a dry run. They did everything but use radiation as they tested my position, aligned lasers with my not-worth-a-damn tattoos, took more x-rays, and introduced me to my techs. This was a brand new machine, a Varian Linac, as in linear accelerator. This beast is about twice the width of a refrigerator and about half again as tall. You lie on a platform perpendicular to it while it rotates around you. It had just been installed and there were a number of folks from the manufacturer on hand as well. All went according to plan and I was back in my car less than twenty minutes later. The next day, Wednesday, was for real.

Mid afternoon on Tuesday the hospital called with the results: The PSA had dropped, big time. Below the threshold. Completely unexpected. The rest of Tuesday blew past with calls to the surgeon and the two oncologists. What to do? Cancel the radiation? Postpone it? Ignore the test? Ignore the previous test? Trying to get three doctors on the phone and then trying to coordinate them to talk to each other and reach a decision was like herding cats. Calls were made, messages left, calls returned, reports emailed. Non-stop one man mayhem until the last email at about 7 PM. But then again it’s not like I have a business to run or anything like that.

Wednesday’s radiation was put on hold. More calls, more emails, more waiting, and a last minute cancellation of an appointment with one of my customers down by NYU. I knew I wouldn’t be able to present Thermos insulated coolers in my state of mind.

The bottom line as of Wednesday evening: The radiation is being put off and a new decision will be made after another blood test in mid-June. Why the wait? The test is ultra-sensitive and measures the antigen down to two decimal places. At measurements below 4.00 precision begins to suffer. There can be day-to-day fluctuations as well. They need to see a trend.

Is this some sort of victory? No not really. Not to put too cynical an edge on it but I think of it as a stay, as in a stay of execution. The inevitable is being put off, perhaps for 2 months, perhaps longer. The fact is that I am living with a boat load of uncertainty which kind of gets in the way of living sometimes. We all live with uncertainty, cancer or not. But the noise of our daily lives tends to drown out the constant hissing and crackling of those demons that keep us up at night. Cancer is one hell of a loud demon though.

The biggest certainties that you come to live with are:
1. Cancer changed you physically. You will not change back. Ever.
2. You have seen the effect of random, unplanned change on your daily existence. You will always see it and it wont fade into the background.

Since March 13th I have met with a surgeon, a urological oncologist, a radiation oncologist, a nurse-practitioner, about 4 or 5 radiation techs, and one radiologist. I’ve had an X-Ray, a CT scan, a bone scan, 2 MRI’s, and a few blood tests. And with each of these occurrences there were the receptionists, the schedulers, and the administrative help. (I especially enjoyed the liveried chauffeur who took me, in a dark blue Lexus with blackout windows, from one radiology lab to its satellite office. That’s health care on the upper east side.) And let’s not forget the insurance folks who dole out the approval numbers and the authorization codes. This engine, this month long project, only moved forward with the fuel of phone calls, voice mails, faxes and emails.

This stuff wears you down and consumes you…even when it’s not wearing you down and consuming you. Conventional wisdom would tell you to enjoy the next 60 days, use it as a respite. That’s what I’m planning.

The Nexus of Reality and the Theoretical

In a few days I begin a regimen of IMRT (Intensity-modulated Radiation Therapy). I’ll go every weekday for the next nine weeks or so. I no longer have a prostate but I have prostate cancer. All they can say for certain is that the cancer cells are in my body, somewhere. As no tumor could be found in any of the scans it’s classified as micro-metastatic disease.

The radiation will be aimed at where they think the cancer cells are. Geographically speaking this would be the area where the prostate was before it was removed. Targeting this area is a judgment call based on experience, very limited research, and probabilities.

I was getting accustomed to the precision of the surgical process with all its measurements and precise outcomes. Pathology reports, like legal documents, use specific language and exact wording. Scans and tests define their results in terms of ultra sensitive measurements of millimeters and nano liters. In this latest chapter I’m learning to deal with nuanced adjectives rather than cold, clear numbers. When certainty leaves the room guessing occupies the space.

The options I’ve been given to choose from are few and none of them are really good. One of the options was to do nothing, put off making a decision. That would give me even fewer choices three months, six months, a year down the line. So to my way of thinking not making a decision is really making a decision, and not a good one.

Facing a treatment that is the result of theoretical constructs and extremely educated guesswork requires trust and a measure of faith. Trust and faith in your medical team as well as trust and faith in your own abilities to navigate the options. I’ve been wondering (usually real late at night) if I’m making the right decision. I simply don’t know, I wonder if it’s even possible to know. What I do know is that it is my decision and I own it.

Cancer and the Google

I read that heading above and all I can think is that it sounds like a new sitcom or kid’s show.

Those of us of a certain age can remember a time when medical information was doled out, bit by bit, only by the medical establishment. Certainly there were libraries, periodicals, and research papers available but who truly had access to them? What knowledge could be gained from discussions with health professionals was limited to their time and their area of expertise. Libraries were for weekends or evenings after work. Medical journals and research papers were essentially unavailable to the general public. Gaps were filled in by popular magazines, occasional newspaper or TV pieces, and of course, the entertainment industry. Let’s not forget hearsay, rumor, and water cooler anecdotes.

But now we have the internets and the Google. Virtually any topic of medicine is available at the click of a search box. Now assuming, and this is a big assumption, that you only access those sites that have real, genuine, scientific, vetted information, you can really amass a whole boatload of vital and accurate stuff. But finding out every possible side effect of every treatment may be finding true information, but it may also be unduly alarming.

For the first few months after diagnosis I lived on the internet, scouring every virtual corner for useful information. The key word here is useful. Before my surgery I found an entry on a discussion group that was designed to give advice as to how to best speed your recovery after you got home. Aha, I thought. This could be useful. But as I ran down the list of things to purchase and things to do in preparation I came across some gems such as, have someone come over and program your cordless phone with commonly used phone numbers, get a haircut before surgery, and have fresh batteries on hand for your television remote control. All I could think was WTF? I’m looking for information about when I can start drinking Scotch again. More investigation showed that this list had been compiled by an older gent, considerably older than me. (A classic disconnect that I have run into countless times: I am in my mid-fifties with a disease whose patient’s average age is 69.) And here you have it: Useful information but not useful to me.

I was advised at one point by Michelle not to seek out and certainly not to watch surgery videos. Good advice but given too late. With no problem I had found a wide selection of videos on Robotic Laparoscopic Radical Prostatectomy (RLRP). I watched ‘em all, you betcha. It was kind of like watching a flaming three car pile-up on the Bruckner, just slow down and stare. Can’t stand to look, can’t turn away.

So how do you find the right stuff and vet what you have found? I think that it is a process that evolves rather than an end to itself. Certainly there are trusted sites run by organizations or institutions that existed long before the net. And there are newer sites that aggregate information. In between is the minefield consisting of discussion groups, wiki’s, and sites designed to sell you something. This last group will often include health institutions and medical equipment manufacturers…which is not say their data is wrong…perhaps suspect is a better term.

So why even search and scrounge for data? I have met those patients who studiously avoid going on the web because, “it makes me crazy.” And I sure know what they mean. But for me I think it comes down to control. If cancer has shown me anything it is its stunning ability to wrest control of your life away from you in a fashion that you could never conceive of. Certainly we all know on a very intellectual level that much of the control of our lives is an illusion and is out of our hands. The old, “Geez, you could be hit by a truck in the next thirty minutes,” speech. But having information, good solid information, for me is something I can wrap my head around. Statistics are finite, studies are controlled, procedures are rehearsed, planned, refined, and repeatable. It may be futile, but for me trying to put a rope around the contradictions, contraindications, illogic, and the vicious randomness of cancer is sometimes what I need to get through the day.

Things I’ve Learned Since Being Diagnosed With Cancer

Telling people you have cancer stops all other conversations.

No matter how invasive or horrible any procedure is, when people find out it takes place below the waist line, someone is compelled to be funny.

It seems that everyone is praying for you. Even folks you never suspected were religious. On those days when you have a particularly bad attitude you have to suppress the urge to tell those who pray, “You’re doing it wrong. It’s not working. I still have cancer.”

Per medical staff, when it comes to any procedure there is no pain, only “discomfort.” If it’s serious pain they call it “mild discomfort.” If it’s the kind of pain that enables you to spontaneously curse in languages you didn’t think you knew, it’s “moderate discomfort.”

Someone will always tell you that you must have a positive attitude because that makes all the difference in your outcome. Not one of these same people can explain how the positive attitude you had before you had cancer didn’t prevent your being diagnosed with it.

In reading about illness I’ve come across articles by people who claim cancer is a gift or blessing because it allowed them to fully appreciate life and become a better person. What a load of pure, unadulterated shit. I always appreciated my friends and family and I’ve made damn sure they knew it. I enjoy sunsets, and summer, and all those things that fill one’s life. I have not for one second been interested in how much of this stuff I can put up with, what I can learn from it, how it might make me better. The simple unvarnished truth is that cancer is horrible because it fucks up your life and the lives of those who care about you. No gifts, no blessings.

What can be said about the state of medical care in our country? The system is, to be charitable, terribly flawed. The Byzantine structure of insurance and medical institutions is daunting. But beneath it all, on the front line are human beings. The doctors, nurses, and techs that I deal with are some of the warmest, kindest, most caring people I’ve ever met. I really like the hugs.

Health Update

Starting April 14 and continuing to sometime in the first half of June I'll be going for daily radiation (weekdays only). It's hoped that this will do the trick, but as I've learned in the recent past, who the hell knows?

Today I was "mapped" with a CT scan so they could figure out where to send the radiation, how long to send it, and how strong. They shoved, pushed, pulled, and arranged me the same way you'd handle a bag of spuds. They had to get me positioned juuuuust right. Once they had me where they wanted me they tattooed targets on to me. Tiny, little dots. I told the tech, "That's no tattoo!" I pulled up my sleeve and said, "Now THAT's a tattoo!" Much merriment.

They also made a foam cast of my legs as I was laying on my back. That's so each time I go for treatment I'm in the same position (with minor adjustments). I'm hoping I can have the cast when this is all done. I figure I can put chips and salsa in each leg-mold for serving large crowds at barbecues.

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.