A Patient Perspective on Cancer Treatment

I was diagnosed with Stage IV HPV+Squamous Throat and tongue cancer early May, 2016 and the tumor board recommended Chemo + Radiation.  I am a lifelong advanced level avocational symphonic choir singer with important concerts imminent and elected to forgo radiation as damage to the vocal instrument was certain and rehab to singing level was unlikely.

 I have lived a "healthy lifestyle" of the non-weirdo variety all my life, conventional (little fast food few sodas) diet, lots of exercise, plenty of sleep, etc. But living long enough puts you in the high cancer risk category no matter how you live as I have found out. Cancer is nature's way of telling you it is time to let the kids take over. Modern medicine is pretty good at dealing with cancer, and aside from cosmetic horrors most people who are otherwise healthy generally can deal with it easily. The cancer scare tactics are medical and alt fact marketing that can be ignored.   But most important I didn't buy into the belief unfortunately promoted by the medical profession that Cancer is a terrible monster that must be eradicated from the patient at whatever cost.

  IT.  IS. NOT.

 Cancer like heart disease, strokes, and many other infirmities of age, are things that need medical attention and may affect life style, but if they are not fatal are issues that must be dealt with in the context of doing things that are important to the patient, even if lifestyle choices may affect the treatment and even the outcome of the disease.

 These diseases of age are analogous to joint damage, broken bones even spinal injuries and concussions.  They may kill you outright, we all die someday, but if not life style changes to fix the problem should not be the primary form of treatment.  A friend of mine was paraplegic as a result of a ski accident on KT-22.  Instead of gently learning to use a wheelchair to avoid further damage to his injury he was organizing wheelie races in the rehab center.  Skiing might have killed him but it wasn't about to change his life style dead legs notwithstanding.

 The tumor board was not happy with my decision to skip radiation, but accepted it and  suggested a very aggressive and dangerous Perfusion Chemo as an alternative to standard Chemo and Radiation with the warning that it was potentially life threatening but would not damage the vocal instrument.  For me the risk/benefit equation of certain loss of singing ability vs a dangerous regimen of Chemo made the Chemo the best choice.  As a singer friend noted priorities are 1. Don't die if possible. 2. Keep singing, 3. Manage the cancer.  I was in excellent health, with an athlete's level of fitness, and decided I could deal with the aggressive Chemo and live through it to deal with any remaining cancer at a later date if necessary.  The tumor board assumed that later meant radiation and more Chemo. I did not.  See 2 above. One thing cancer treatment does is that it forces management of priorities to accommodate the extra sleep, and immune system degradation associated with any cancer treatment regimen.

 Two important events I chose to accommodate were coordinating a convention blood drive early in the treatment, and singing a concert at the end of the treatment.  The blood drive was relatively easy. An aggressive medical face mask to deal with the crowd and instead of commuting I stayed at the convention hotel to provide frequent rest breaks, and longer sleep at night.  The concert preparation was more difficult as the extra evening rehearsals could not be missed, nor could the vocal exercises be ignored as the Chemo affected the vocal instrument, and had to be compensated for. I had to assume the chorus was basically healthy as a face mask could not be worn while singing.   Non-essential time sucks like Facebook and Email got minimal attention, and other social activities were eliminated as possible.  But I did sing the concert with my voice in good shape right after the end of the Chemo.  


 It is important for the patient to understand all of the side effects of the chosen procedures and be prepared to enlist the help of the procedure specialists ahead of time in dealing with ER and attending physicians that may not be aware of some of the less common side effects.  One that I found out the hard way was that perfusion can totally shut down the GI system so that no food is processed even if it can be forced down.   Another is the tongue can be totally disabled by sores and thrush so that even liquid nutrition ingestion is difficult without aggressive treatment of the thrush. A popular Chinese folk medicine called Watermelon Frost in English was helpful once the GI system was able to process food. It is unknown to most physicians as it is not an officially recognized treatment of tongue sores.  Ask a Chinese friend who will probably have it at home or can get it for you at a Chinese ethnic market.  Professionals on the Oncology staff should know about this folk healer and suggest it as "maybe helpful." They have suggested Culturelle and L-Glutamine as "maybe helpful" and they have been "maybe very helpful."

 The aggressive treatment as advertised nearly killed me after each Chemo session not helped by some "going through the motions" inpatient attendings, but I actively managed my treatment and made it through the rough spots.  It was all worth it as the cancer was undetectable at the end of the treatment much to the surprise of the tumor board. 

 A routine checkup nine months later showed a recurrence of tumor and a new round of the aggressive Chemo was tried.  That one had to be terminated half way through because of a new side effect that caused a cardiologist to discontinue the chemo.  The tumor was half gone but that was not good enough so it looked like I would have to bite the bullet and go ahead with radiation.  I eliminated all the other options after thorough investigation with the help of the radiologist who in his investigations found a procedure that would minimize radiation exposure to the vocal chords while providing therapeutic radiation to the cancer.   As he explained it the chords would be minimally affected but there were no guarantees on the rest of the instrument.  Again I had an important concert at the end of the procedure and decided that if I exercised the instrument diligently I might even be able to sing the concert.  A different chemo and the radiation was benign enough that singing daily was no issue, and the voice survived the treatment in better shape than before the treatment.  I sang my part of the concert and even got a few unsolicited comments on my vocal quality.  

 I don't assume that I am done with cancer even though the latest scans are clear, but pushing the specialists to find alternatives to the standard and very effective treatment of Cisplatin plus aggressive radiation, has resulted in a treatment protocol that I can live with that has minimum inpact on the important lifestyle choices that are necessary to happiness. I assume it does not comply with the cancer industry's paradigm of kill the cancer at whatever cost to the patient, but it works for me.  

 The Kaiser Foundation's Northern California HMO worked just as advertised.  They put my lifestyle needs first throughout the treatment protocols, and once I refused the "No problem, the cancer is above the clavicle we can cure that for sure with Chemo and Radiation." they put the whole Northern California Cancer team on working out an acceptable solution to my treatment. Specialists as far away as Sacramento were involved to rule out a new hi-tech surgical procedure to deal with the residual cancer, and the pros and cons of Proton radiation therapy were explored with an associated facility at Scripps Institute.   

 They certainly lived their motto of "Thrive" according to the patient's lifestyle standards.   

 

US Politics Invade the Blue Roads

Damn.


 I was a political activist for ObamaForAmerica Obama's grass roots group in the 2008 primary for the first time since the Vietnam protests as he clearly was or at least pretended to be a different Democrat.  To this day a waffle on that matter.  I would like to think he was real and fucked by the Neolibs who might well have moved to McCain without his cooperation just like they fucked Sanders after the primary even knowing it would cost them the election. 

 The 2016 election was going to a populist even one who lied about it.  Clinton could have lied convincingly about supporting the progressive parts of the platform and walked away with a Popular and Electoral Mandate with no third party mumblings or Bernie-or-Bust blaring and appointed the Trump Cabinet anyway.  It would have been much more effective for the Neolibs since they had the House at least and enough Neolibs in the Senate behind them to ram anything through they wanted.  Maybe even a slaop to the poor, like $15.

 Prior to Obama it was not clear that TweedledyDem or TweedledyRep was the lesser evil. Or, why Boomers and Gen X essentially left politics to ALEC who supported both. We had no voice in either. Or perhaps no voice at all. All we could do was protect our backsides and assets (NIMBY anyone?) as best we could, and think long and hard about whether the USA was the proper place for children and grandchildren.  Most of us seriously considered whether it was fair to grandchildren to even have them if the USA was the only choice. In 1989 I had a life changing summer and it was a toss-up between Silicon Valley and Denmark to start over.  (I had recently read Friday and even Warwhoop Tumbril made California look better than anyplace else in NA.)   

 It is no accident that many millennials are childless.  Unless you or your estate can afford to pay for their education, it is best to adopt a pet.  



 The 2010 bloodbath happened because Obama and his Neoliberal Clinton gang fucked his 2 million small $ supporters and activists that got him the nomination in 2008.  It was clear that he had done so during the campaign and if McCain had had the courage to take on the radical right to choose a decent VP, he might just have swayed enough of us to give ALEC a poke in the eye with a sharp stick.  It probably wouldn't have made any more difference than Obama's bullshit Organizing For America in Washington, but it would have been enough to bury the Clintons and open the door for the progressives.  

The History of Dog Food

From a facebook post, edited.

Feed your dog good food, not dry food every meal. Even canned dog food is chopped up throwaway parts, fat, gristle.  A good meal for a dog is meat, brown rice and a vegetable. Milk and egg. They really like vegetables, especially cooked broccoli, carrots, sweet potato. You want to baby them? Put a little butter on the veggies.

 Don't forget the fat, gristle, and skin you throw "under the table". Dogs lived on that and other human garbage ever since they quit hunting as wolves.  At some point in history, a subset  of wolves, found it easier to live off the garbage of humans, a pretty messy bunch, who even then left offal, gristle, bones, and half eaten meals in their dumps which were the on the edges of their settlements on non-arable land.  These "follower" wolves lost the ability to hunt with a pack, and avoided humans by barking instead of howling.  They barked to alert the herd, no longer a pack, to intruders for mutual protection, but also alerted the smart, well-armed humans to dangerous intruders animal and human.  The follower wolves kept dangerous wild animals away from the dump and therefore the settlements, lived off of and cleaned up the human leftover food to the mutual benefit of both species.  In the beginning the follower wolves were still vicious wild animals, but learned to avoid the well-armed humans and were tolerated for their garbage collection and warning behaviors. 

 Hat tip to Jon Franklin for much of the above.   From there to The Wolf in the Parlor and under the table you will have to read his book of the same name.  Available at https://www.amazon.com/Wolf-Parlor-Came-Share-Brain/dp/0312662645 and elsewhere.
  T
 Animal food is the invention of the white flour industry to use the nutritious parts of the grain they throw "under the table."  

 In the late 19th century the big flour mills in the Midwest had a shelf life problem for their traditional whole grain flour.  The shelf life was too short to get the product to the population centers on the East Coast. Their solution was to separate the germ which was the spoilable part before final milling to create the standard American "White bread" flour.  

Once separated from the whole grain the germ spoils rapidly unless processed and the flour mills had trainloads of the stuff to get rid of.  Dumping was not an option as rotten grain germ is a smelly nuisance. Animal food processors and cereal producers had the ability to steam process the germ into stable pellets and flakes for later consumption and white flour became economical to produce. 

 An amusing industry sprung up arbitraging trainloads of short lived germ as they went from the mills to the germ processors.  Neither the mills nor the germ users could afford an interruption in the supply chain, but of course wanted the best price at their end of the chain.  The arbitrage involved the timing of the trains.  Guess right and the processors bought high, guess really wrong and you had a trainload of garbage to clean up.
 

On Humor

 Another guest post to begin an essay I have been thinking about for a couple of years now.

 

Nyah Wynne

https://www.facebook.com/nyah.wynne/posts/1462293957177821#

Somehow we have gotten this notion in the culture that humor is value-neutral. That something being a joke means it doesn't mean anything, it doesn't affect anything. But it's absurd. Humor has a powerful social function. Several in fact. It can help people bind over shared adversity. It can smooth over feelings of social discomfort around uncomfortable or uncertain events and ideas. In this last, a message about how to think about something is often included implicitly. But it also plays a very large role in social censure and definition of in/out group. As social censure it acts as an attack against people -doing- things that are culturally deemed unacceptable but not so bad that they warrant punishment(or where social systems don't exist to enact punishment). This can be very useful, as mocking those acting rudely or engaging in petty cruelty can help to correct those actions, or can be destructive if the taboos they enforce/reinforce are unjust.

But this same social censure can end up targeting whole groups of people along utterly arbitrary lines. And when they do they tend to create/reinforce and recreate in each new generation systems of social advantage/oppression. Humor is possibly The Strongest Inculcation Tool for teaching prejudice. Because it is a set of social cues we are primed to respond to without thinking. Because humor has such a strong group-bonding component, the social incentive to laugh along with the joke is high. And when you see others laugh with the joke, the incentive to tell similar jokes is high. And the group bonds over it, and the message sinks in without really ever being critically appraised. And eventually that message forms a baseline subconscious assumption about the world unless you run into a strong reason to actively work to weed it out.

It ends up playing a part in defining on a deep level who is and isn't fully worthy of empathy. Who 'deserves' abuse. Who should automatically be respected and who shouldn't. And these same things end up coloring how we see the world. How we respond to what people in various groups say and how they act. Who is given the benefit of the doubt and who is suspect. Who is assumed to be competent or worth listening to. What sorts of ideas are even worth consideration, because humor is extremely good at painting whole ideas as beneath contemplation and therefor dismissed -without ever being consciously evaluated-. Whose ideas are worthy of such thought.

Because the same mechanism involved in many of these sorts of jokes is the social tool we use to single out rude people, or liars, or people who cheat. It's never just a joke. It's a bit of prejudice you learned at some point that you never even noticed yourself learning, which you are passing on without realizing you are doing it. No one joke is going to just make a person prejudiced, but each little bit adds up. Because as rational and introspective as we might think we are, as humans we are all pretty impressionable, and worse we tend to be very blind to how we are being affected.

Think about your humor. What you laugh at. What jokes you pass along. And if you get called on a joke, instead of getting defensive, consider questioning the joke itself. Why you found it funny, but also what sort of messages it's conveying. You telling this kind of joke doesn't make you a bad person, you just picked up somewhere that it was funny. But it still has an effect, even if you don't see it.

Mel Brooks/Groucho Marks:

Tragedy is when I cut my finger.  Comedy is when you fall into an open sewer and die.

 All humor is ultimately a pratfall, but most important the pratfall happens to "them" not "us."  Think of any ethnic joke.  OK you got one don't you?  Now name your most important in-group.  Your church, your school, your community.  Now tell the joke with the ethnic group replaced by the in-group name preferably aloud in the in-group.  Is it still comedy or does it become a tragic comment on the failing of the group, or worse it makes you rude to point it out.  

 The truth of the pratfall is irrelevant to the designation.  You may claim it is ironic, or if it is perceived to be on them, satire but the message is clear: This is what they are/do and we must be careful that it never happens to us.  

 One of my favorite religious jokes is the poem 

We are the world's sweet chosen few.
The rest of you be damned!
There is room enough in Hell for you,
We won't have Heaven crammed.

Note the open sewer there.  It may be simply a mud hole if you don't believe in Hell, but nevertheless if one of "us" fell into that mud hole all would rally around to rescue the victim, and the joke falls flat.  The message for apostates is unmistakable and the message for non-believers is that you deserve the open sewer preferably sooner rather later, and "we" will be glad to help. 

"It's a joke, son." is a way of defusing criticism of behavior that is not consistent with the mores of our tribe by associating it with another tribe, preferably one that is not too dissimilar but clearly not one of us.  Interstate jokes being the most benign as the neighboring state is clearly a lot like us and only the worst of them indulge as the butt of the joke. The sharp edge remains however to remind "son" that we don't do things like that.  If the cutting edge of the humor doesn't cause a bit of discomfort in the audience of the comic it probably was wasted and unsuccessful.  

Humans laugh because they are uncomfortable but either unsure of the source of the discomfort or because the source of the discomfort is a trusted figure of some sort.  Consider tickling.  Tickling is a serious invasion of personal space.  But only someone that has permission to invade personal space can be in a position to tickle.  It is a restrained aggressive act, but protest would be inappropriate so we express our discomfort with laughter. 

Da Capo. 
 
https://www.scientificamerican.com/article/the-brain-can-distinguish-between-real-and-fake-laughter/?WT.mc_id=SA_FB_MB_FEAT

“Laughter is really interesting because we observe it across all human cultures and in other species,” says Carolyn McGettigan, a cognitive neuroscientist at Royal Holloway, University of London. “It's an incredibly important social signal.” ...
Subjects whose medial prefrontal cortex “lit up” more when hearing the posed laughter were better at detecting whether laughs were genuine or not in a subsequent test. (This brain region is involved in understanding the viewpoint of others.) “If you hear a laugh that seems ambiguous in terms of what the person means,” McGettigan explains, “it makes sense that you're going to try to work out why this person sounds like this.”

 There is a lesson in this for those who persist in telling jokes that are offensive to some.  They can tell that some are "laughing to be a part of the crowd" or to be polite.  How they deal with that knowledge is an important social signal that can in an extreme situation be a reason for calling them out as an asshole that does not belong in the social circle they pretend to be in. If it is yours, kick herm the hell out. No Platform the asshole.

On Those CSI Questionaires

Jonathan Korman

1 hr · 

Twitter

 · 

Retweeted John Paczkowski (@JohnPaczkowski):

Some good @ceodonovan here: Nobody Knows What Five Star Ratings Mean. That’s Bad For Gig Workers https://t.co/VV3kiWnwa1https://t.co/vPtpQkJX1C

LikeShow more reactions

Comment

Share

Comments

Suzy Thompson Fuck. I hate systems that are designed to force you to be dishonest. In my mind, 5 stars is exceptional and I want to reserve it for only the best experiences. But this is saying that I have to give five stars unless I want to penalize the worker, and there's actually no system to support (or perceived value in) giving high praise. Good to know, but feels like shit. -_-

Like · Reply · 3 · 1 hr

Carlin Black I used to make a good living teaching a FUBAR UI where the CSI rating was Very Satisfied=10, Satisfied=5, Good =3 and downhill from there.

Like · Reply · 39 mins

Carlin Black If a service provider ever asks for a good survey rating, the only acceptable answers for the individual provider if hesh did a decent job is the highest possible rating. For most systems anything less has serious consequences. You are not being asked your opinion on anything, you are being asked to compensate a service worker. http://customersatisfactionmanagementassoc.com/

Customer Satisfaction Management Associates. - Home

CUSTOMERSATISFACTIONMANAGEMENTASSOC.COM

Like · Reply · Remove Preview · 10 mins

Carlin Black You can register your opinion of the institution as you wish on the survey introduction, but when you get to the "Thinking about the person who handled your problem" chances are that pay is directly related to your rating. If they were at least competent just hold your nose and pick the highest rating on all questions. Many times their job hangs on a string of 10s or 5s in a five star rating system.

Like · reply · Just now