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.