Cancer, & me

Well, it's been one year since I took up a short term residence at my hospitdal of choice, Beth Isreal in Boston. When I went in last year just about now...I was going in for IL-2 treatments for renal cancer. The idea was that the IL-2 would be the silver bullet to kill the disease. Only about 10-12 per cent of patients receive a positive outcome from this treatment.

For the past year I have been radiated, magnetized, and otherwise watched like a child waiting to say its first word. I have seen medical fellows come and go, and I have encountered the human element in this rather extensive medical inquiry into cancer treatments and the thrist of a cure. My last tests three months ago, they gave me a positive reading of my scans, only to find that they hadn't read them correctly.

Some of these experiences have given me greater clarity about the industry of politics and science of cancer in America, if not in the world, and how they form a troika that interacts to serve up treatment, or not to serve up treatment, mostly because of cost metrics.

Metrics control a great deal of our world today...those numbers that point this way and then that way, depending upon who is coloring the wall upon which they are projected. As our local football coach has said, "statistics are for losers." And, as each cancer is an individual journey, trying to round out the patients into a generic fold that somehow shapes our treatment is not a positive step for for the patient. Because, in the end, it is our cancer that we are most worried about and the larger existential role it is now playing in our lives. As a patient I am a little more self-interested than a non-patient.

So, fuck you metrics.

OK, I promised myself I would make this a short piece, so let me wrap up now by saying that last week I had all my magnetized, radiated, and vein popping experiences - on Wednesday. That afternoon I spoke with a new fellow, and my lead doc here in Boston, a brilliant man at the very cutting edge of cancer research...so feeling pretty good about him. They had only my chest CT to study and measuring, this time with me in the room, they found that the tumor in my chest has not grown, and may have in fact gotten a weeeee bit smaller. Take that you terrorist motherfuckers.

The renal cancer encamped on my pancreas, not as significant as the lymph node in my chest, has grown some, but seems to also have taken a summer holiday. I am all for cancer taking a holiday, by the way.

So, as it is, I am back on the shelf waiting for the new PD-1 drugs to come out and to fall into whatever group they think I belong to receive treatment.

For me, the patient, I always refer to Herm Edwards..."the purpose of the game, is to WIN the game..."

So, on the bench and waiting to get in the game, Capt'n Jack Moonbeam, otherwise known as Tim...

GOOD MORNING AMERICA!!!

Good Morning America....

Just watched a great Robin Williams comedy routine on Youtube. The thing about his humor that I liked, is he took no prisoners, so to speak. Everyone's hubris and pomposity was at risk once he started talking. That was his genius, just to let the truth out as his mind saw it and responded to the insanity of the world around him. Like Jonathan Winters, these are rare individuals with a sense of play that is a gift and for which we will be looking for when explaining the world through our normal logic tree just won't work. Winters and Williams were key reminders, despite their mental illness, that life should be fun, and many things need to have less importance than we give them. I hope the memory of his death will be but a footnote to the fun he provided to us all while he was alive.

Today, I am sitting in the Food Court watching the rain come down on Boston. I find it amazing how many people are focused upon their devices. I have a crash pad, so to speak, in Boston. Which means that I have to share a space with other commuters. It is a strange mix of folks, but what ties them together is the small light in their hand spewing forth information of no interest to anyone, especially late at night when the lights are out and others are trying to sleep, including themselves, other than that they might miss the ongoing unimportance of it all. And, to be detached from the unimportance of mediocre flow of things would mean that you'd have to take some time and actually thing about something. People thought email was good, but it takes too much time to delete all the shit that accumulates there.

The tide of mediocrity is far easy to focus upon than the real events growing like the forces of the Dark Tower that seems so far away, but that is undermining our world everyday. Let's face it, we are the latte society and we'd rather be plugging in our ear buds and sipping the whip cream off our coffee than to sit down and say, "man that is really fucked up, let's do something about it." You know, like those folks in 1930s who saw the black tide rising, but couldn't get the attention of the populace until it was too late. As Mark Twain said, history doesn't repeat itself, but it does rhyme. Leader's today think because they say it is not so, it is not so. Think POTUS here. I've disagreed with my POTUS's since I can remember thinking about what they have been doing, but I have never been as upset by the current POTUS's inaction than any of the actions by former POTUS's. He is a victim of his own hubris...a milk chocolate narcissus failing because he is too concerned by his own image.

Thinking is becoming not so much a lost occupation, but one fighting a war with the new technological world that seeks to replace thought with sensory experiences that dominate the space between our ears. We fool ourselves with the idea that we know shit, and when we do know shit we tend not to do anything about it. You can see it in our politics, religions, and unfortunately, as a crutch for our supposed intellectual class. Instead of arguing for some sense of truth or justice, the argument is to swing our emotions through hot buttons issues, like abortion, rights of women, rights of minorities, rights of vegans, rights of the right whale, rights of the tiny fishes that live in the mud flats of San Francisco Bay...solutions are not the issue. Well, guess what, gang, sometimes the opposition (in a democratic society, qualification needed here) has some important ideas that will help shape these issues.

Are we suffering from global fucking warming? Who really knows. But are we polluting our environment to the point that illnesses are becoming more apparent because of that pollution, yes. So, while the discussions rages about global warming the focus is diminished that, hey, let's not put so much plastic into the oceans, or PCBs, or mercury, these are all things that we do everyday. Let's fight the little wars in this area first, then see some successes there before we try to say that the earth is getting warmer, getting colder, and that it may be sun spots, the natural life of the earth's environment, or whatever that is causing temperatures to swing. It's not a political issue, but putting shit into the ground is and we need to focus upon that. Not everything has to be an extreme non-negotiable issue. Sometimes we have to agree to fix shit, even it's not on our honey-do list.

Our youth, I wonder when they'll wake up and see that my generation has not left them in a good spot in the world. I have to accept that Bush 1, Clinton, Bush 2, Obama, and whoever is next is on us, and the reading of history will not be kind. And, they are the product of my generation. Fuck me, man, not good kimo sabeeeeeeee.

I was on the bus the other night, commuting from Boston to Portland ... the bus was full ... and a young girl who sat one row back and to the side of me put on her head set. The music was of some contemporary band of neanderthals that pounded out electronic syllables of an incredibly course kind that made me want to stick an ice pick into my fucking temple. The fact that the music was so loud that I could hear despite it being played through her ear buds says something of how fucking loud it was.

Now, don't take me for a musical prude in this area, because I grew up with rock and roll and still enjoy Clapton and blues rock with the best of anybody, but what I got from this music and her toe tapping and head weaving in her seat performance, to say nothing of the elderly gent next to her who was taking his pulse every few minutes to make sure he was still alive, was that the music seemed to announce her presence on the bus and to make her a mindless cypher. After about half an hour she turned it off, pleased with her announcement on the bus that she was there, and that she had interrupted the Jerry Seinfeld episodes that everyone else was watching just enough to feel good about herself.

I don't think it is so much a return to primitivism, which is one explanation I have heard of the supporters of the retreat by so many young people into the mind meme of the repetitive syncopation of electronic cleverness, but the new modernity into which we are falling that requires little thought, and too much of a retreat into the wall citadel of our hubris. Good music is good music, and I may find myself listening to Muddy Waters or B.B.King, and then to Chopin and Liszt...to say nothing of my life long love of Beethoven and Gershwin. Note: I am a well-rounded guy.

Modernity has many problems as we try to find our place in an ever alienating world. One is the force that channels thought toward sensory experiences without a parallel course of intellectual and emotional maturity that seeks to understand. I find people today less fun, less thoughtful, more willing to be alienated and to retreat behind banners...some faiths do this, some do it pathologically...The Dark Tower awaits, too bad we won't have Robin or Jonathan, or Mort Sahl to poke fun at the nonsense, so that we can be relieved for a moment and to recognize the nonsense every once in a while and not take ourselves too, too seriously.

From the Food Court, Capt'n Jack Moonbeam...

P.S. I am trying to get a melanoma this summer by sitting  in the sun a lot. No luck thus far. The reason for my interest in multiple cancers, not that I am keeping score in this area, is that the drugs I need to combat my Kidney cancer are being approved by the F - fucking - DA for skin cancer. The thing about getting drugs is that to be treated with them, and to have insurance companies pay for them, they have to be approved specifically for the type of cancer you have. Otherwise, go fish muthafuka...Think Dallas Buyer's club, but for most of us cancer patients who await treatment drugs that show promise, we can't just get a prescription, we have to wait and be part of a trial. I've had cancer for about 14-16 years, I think that is trial enough. To me, if a drug is approved for use, it should be used, but the irony is that the science and the politics of it is that going out and helping people as best we can, we restrict it to the politics of who can be helped and who will get credit for the helping. The system is not good here, because it places, like everything else, the power of these decisions in the hands of people with little interest in the process except in their own advancement. The fight to cure cancer is really not the battle we are fighting, it's the fight for the right to say I have cured cancer. Not gonna happen, buckwheat. If we are fighting an illness the doctors have to have more freedom from the politics of it all.....every fight is individual, and every fight is new for that individual...the politics of health care, cancer fighting, and government control of resources is something we all should pay attention to, because someday, it may be you waiting to get treatment for something and your doctor will say, I am not an approved provider of that service....not fucking good, kimo sabeeeeeeee.

Ok, I kind of rambled today, but it's raining out and I am in Boston with not much else to do...

Moonbeam Adventures, New Gods, & Future people

I've been away.

...away on a trip...

Now this sounds weird because I have not actually gone anywhere that my wife or friends have been able to recognize and ask, "Hey Capt Jack Moonbeam, what was that trip like?"

At first I thought it might be an acid flashback. You know, one of the 60s-70s bad choices come back to haunt...

But, what I have come to recognize is what my true experience was. So, let me tell some of it the best I can.

I was driving home one night from Boston, which is a common enough experience for me. Usually a two hour drive, but like the S.S. Minnow and Gilligan's assembled misfits, my two hour tour turned into a trip from which I have only recently returned, and may slip away again at moment's notice.

Where did I go? Why did I go? and what did I learn?

Well, it all started when I switched the radio channel from my usual talk channels for sports and news, and tuned into a soft rock channel with music that was easy to listen to. That in itself was a key mind bending experience. The music was hypnotizing in its blandness and soon I found my mind drifting, the lights flashing, and the darkness surrounding me on the road to ...Cap'tn Jack Moonbeam's Adventures into the Future.

The drone of the radio kept going and my mind kept wandering, lost in the timeless of the road, the lights, and the great dome of darkness and stars above me.

Suddenly, someone asked me where I have been and why I was there.

Dumbfounded, and a little startled, I looked around to see who it was. Which in a Mini Cooper, well, there's not much room to hide. But what I found was that I was standing on a darkened street with many people standing just in the shadows. They blended with the darkness except for the light glow of their faces, still indistinguishable, but there like little anonymous lanterns that had just lost their light.

Where am I...I asked toward the Shadow People?

You are in the land of the Jo'tess, came a unified reply.

One figure stepped forward, it was a man, I think?

Yes, you are here in the realm of the Prophet Jo'tess. We welcome you from the darkness.

Then he led me away toward a small house not far away. I mean, you'd go too, right. Anyway, the Shadow People around me kept at an acceptable distance, so the weirdness of it all didn't seem to bother me much, Well, until I remember it all, which is right now, so I am feeling weird about it now, and if I wasn't in the Food Court, I probably run screaming into the bay and try to swim away from the madness.

Back to the story, er, I mean my experiences in the Realm of Jo'tess, the Prophet. Which I'll just call the Prophet from now on unless I do otherwise.

The man that led me to the small house was tall, with seemingly long blond hair that was cut to look shaggy but seemed well taken care of. And when I was able to see the other Shadowed People, they too seemed to wear their hair in a similar fashion and they all dress the same, a casual, yet stylistic assemblage of light sweaters and slacks. I looked for women, but everyone looked the same and blended together into an enormous mass of sameness. Creepy.

What is your name, the man asked?

I am Jack Moonbeam. You can call me Jack if you wish.

Well Jack, I am Him of the Prophet Jo'tess.

Where am I? I asked again, the eyes of many looking into the window of the small house. Their heads swaying like the tops of tall trees in a light wind. Some only opened one eye, others blinked rapidly, and others stood with both eyes closed and hummed a tune I couldn't understand, the sound of which swelled and ebbed with the soft light inside the house.

Well, Him of Jo'tess, (...and I found it convenient that Him of Jo'ess spoke English, with a slight twist that seemed a caricature of our language. What if they spoke Hot'tentot, I'd be really screwed and this account would have taken a completely different direction.)

...Yes, Jack, I am Him of the Jo'tess and we welcome you to the land of the Prophet.
We follow his word as written in the Book of Rules, and for that we have survived the great calamity that has fallen amongst the peoples of other Prophets and other lands.

What calamity, I asked, curious to know, but wondering why I wanted to know.

Peoples followed many different rules, and those rules came into conflict with one another. They sought not to live with acceptance and tolerance, but to exterminate one another...we came here to the land of Jo'tess to survive and to follow the Rule of the Prophet, Jo'tess, who guides us with wisdom.

Suddenly in unison the voices around the house sang together, which is what unison means, the following........Produce isn’t as nutritious as it used to be. Experts say the fruits and vegetables we eat today are grown faster, and picked earlier – which leaves them with less time to absorb valuable nutrients like calcium, iron, phosphorus, and Vitamin C. In fact, a recent study found at least 43 common garden crops that have lost as much as six nutrients since 1950. Woooow....A recent study found.....mmmmmmmmmm.....

Him spoke again...we learn much from the Prophet about how to care for our lives, what to eat that will keep us healthy, and how to be inquisitive into the lives of our fellows and sisters.

Hmmm. I thought. No, not Him, but Hmmmmmm?

The Prophet cares for us and proclaims the rules of our god so that we can live a good life, nurture our kind, and live separate from the chaos caused by the great calamity that befell all the peoples of the world.

Are you the only people to have survived?

No, there are others, but they do not to follow the Prophet.

Where are they?

They are cast out into the wilderness of chaos. They have no Prophet, and thus, live without order. We protect ourselves from them with our Rules, proclaimed by our god.

I heard a soft murmur growing outside...

Rule of Th....Rule of ummmmm...they sang it over and over again......We’re eating more calories than ever before. Researchers found the average person drinks about 450 more calories a day from beverages alone. Those extra calories can easily pack an extra 29 pounds to your waistline each year. Hosanna, Hosannah, Ho....

Him spoke again...yes we live by the words of the Prophet found in the book of the Prophet that has laid out the Rule.

Then another chorus broke in and seemed to swell with the conviction of the singers..."...most chickens are cooped up in a cage, where they’re fed processed corn and soy that’s designed to help them grow faster – but not healthier....hosannah, hosannah, ho, healthier more attractive chickens is what we want, so sayeth the Prophet, Jo'tss...ummmmmmmmmmmm....

Him brushed lightly at his blond shaggy (almost) hair, and leaned into the light where I could see his face more clearly. He spoke with a deep voice that was melodious and soothing........he sang....Rule as spoke by the Prophet....You find someone with the same priorities. Studies show that the happiest couples have long-term goals that are compatible, as well as similar ideas about hot-button topics, like money and parenting.

His head started to sway back and forth and the People in the shadows sang a chorus that sounded remarkably like what Him had said to me....you find someone with the same priorities....hosanna, hossanna, ho....

How did you come to know the Prophet.

Him spoke: Him lead us here and we came together to share the same priorities. We follow the Rule, the Word, and our happiness depends upon our faith in the Prophet's truth and in his explanation of the Rule of our god, Thum.

Him looked at me, his blue eyes sparkling in the soft light of the room, the many eyes of the shadowed people looking in through the windows, their heads forming a sea of continuity  that stretched back into the forest of the Prophet in the land of Thum.

....at this point I found myself awake and driving up the backside of a semi doing about 75 MPH northbound on I95, the radio spewing forth a Rule of Thumb from the John Tesh show. I quickly snapped off the radio and braked hard to the side of the road. Turned off the engine and just listened to the sounds of cars and trucks • You find someone with the same priorities. Studies show that the happiest couples have long-term goals that are compatible, as well as similar ideas about hot-button topics, like money and parenting.

Cars and trucks rolled by in the darkness, their lights flashing across the pavement. 

I thought I saw many heads in the darkness, coming closer to me, rising up from the forest, singing a soft melody, you must follow the Rule of Thumb, you must follow the Rule  of Thumb....Rule of Thumb proclaimed by the Prophet, John Tesh....

Wanting to scream, I found it inadequate in my loneliness on the road...I restarted the engine and drove away into the night, seeing the crowd of blandness and followers of the Prophet swam over the road and overtaking other autos and trucks like a locust invasion from which we will not survive....

This is a warning. Beware the Prophet and the Rule of Thumb, whatever it may be!

New Home Page...

New Homepage, please visit.

http://nandupress.wix.com/timnorris-nandupress