Thus begins my second year of writing this blog.  I wasn't supposed to be around to write for so long; the beginning entries were about death and atheism, and I thought I would do a post a day.  Now, a year later, the topics range more freely, and sometimes I panic a bit the night before my once-every-three-days entry is scheduled for the next morning.  Several friends have suggested that I should try to publish the blog as a book, a flattering comment and one I've considered, though so far I haven't actually approached any presses.  By now, there are so many entries that the blog would need editing, and, not to be morbid, a book would need an arc, a conclusion as well as a beginning, and I'm not ready to write a final entry.

Excerpts from the blog are going to be published in Oklahoma Humanities, the journal of the Oklahoma Humanities Council, one of the few such publications in the country that does serious writing, not just fluff pieces.  The editor, an old student, sent me several questions for her introduction, so I'll attempt some preliminary answers here.  The first was what prompted the blog.  One answer is that once I was diagnosed with cancer, I wanted to re-establish contact with old friends, but it seemed monotonous to tell the same story over and over again.  I thought about Facebook, which I had resisted, but decided a blog might be just as effective and less addictive than the temptation to spend hours a day on a new Facebook account.  In May of 2011, I had given a "Last Lecture" at Washburn as part of a long series there.  When I agreed to do the lecture, I had no idea that the title held a certain irony.  By the time I gave the talk, everything had changed: I knew my diagnosis and the prognosis.  On the way to the Friday afternoon talk, a colleague had asked where I was going, dressed up and carrying notes, and after I told him that I was giving a last lecture, he joked, "What? Are you dying?"  I answered with my oft-used Eliot quote: "We're all dying with a little patience."  But I don't think he got the allusion.  I decided to give the speech I had already considered on the happy role of serendipity in my career, not a speech focused on cancer.  By a year later, however, I debated whether I should ask to give a second last lecture from a different perspective.  I decided not to.  But I did think that I had something to say rather than the usual clichés about living every day to its fullest.  I hadn't had any epiphanies, and I hadn't suddenly become a different, more thoughtful person.  "Follow your bliss" seemed rather hollow.  Rather I planned on a day-by-day report on what it's like to live a "diminished" life.

I've always loved to write, and a blog seemed a good way to fulfill that desire.  I tend to write quickly, and I wanted the blog to be--and feel--spontaneous.  I rarely have more than a general idea when I begin to write, and although I reread what I've written before I hit "publish" to get rid of typos, I've never edited a post, nor do I go back and re-read what I've written once it's been published.   I do worry that I'm going to inadvertently repeat stories, but I want to preserve what I hope is a sense of immediacy in the blogs.  Obviously, too, I miss teaching, and the blog, as it's diverged from the original focus, provides the opportunity for talking about literature (and politics).  I hope the blog isn't too preachy; I'm more worried that it risks becoming too "teachy."

I searched for a title and am embarrassed to admit that I thought that kidney punched and rabbit punched were synonymous.  I wanted to suggest the sudden, prolonged, and "illegal" blow which had struck at my left kidney.  The atheist in the subtitle was a reaction to a specific comment from a liberal columnist on a television show, someone whose opinions seemed to coincide with mine until the host mentioned the death of the atheist Christopher Hitchens and my supposed soulmate launched into a tirade about how atheists should shut up about their non-belief and leave the good Christians in peace.  So much for imagined shared values. 

One limitation of blogging is the (self-imposed) length of the entries.  I want them to be long enough to have substance, but not so long that reading them becomes an imposition.  The other stricture is a consideration of audience.  Most of my readers are people I know, so I don't want to retell stories that they've heard or detail feelings that I've already described on the phone or in e-mails.  But, as I look at the audience statistics, there are clearly readers whom I don't know, and I don't want to seem unclear or enigmatic.  I regret the lack of humor in the blog.  I just watched Dave Barry on "Morning Joe," and his columns were always something I aspired to emulate.  In e-mails, a lot of my humor arises from comments on the foibles of people I know, but those aren't possible in blogs read by those same people.  Despite the main subject of the blog, I'd like for it to be, at least sometimes, less sober and more humorous, but so far I haven't found a way of solving that problem.

When I started today, I planned on answering several of the editor's questions.  I think, though, I've written long enough on just one of them.  I may worry that I won't have anything to say on a given day, but at least that doesn't seem to be a problem.  I may have a moment of panic Thursday evening, but I'll be back Friday morning, hammering away at the keys.

Yesterday was another day--they occur once every three months--of the full battery of tests at the KU Cancer Center.  The first appointment was at 9:15, so we didn't have to get up too early, a relative term since I tend to wake up before 6, and during vacation and on weekends, Mohamed is likely to sleep until 10.  Since I was having CT scans, I couldn't eat or drink anything but water until after the scans.  A morning without coffee is like a beautiful woman with only one eye (to paraphrase Chateaubriand, who was talking about a day without wine).  Since it always takes exactly 75 minutes to get to the center, no matter the traffic, road construction, or time of day, we left at 8 and got there precisely at 9:15. 

First comes the blood work.  The waiting room was packed, but the wait wasn't long.  Marci, a cheerful sort, took the blood.  She was efficient, but kept dropping things on the floor, which seemed a little worrisome.  Since a scan was scheduled, she put in a port to draw the three vials of blood.  That done, we went to the basement where x-rays and CT scans are done.  The waiting room there wasn't crowded, but they seemed already to be running late.  I was finally called to sit on one of three chairs in a hallway and drink my two large glasses of what now seems to be pure water, a big improvement on the kind of drinks they used to serve before scans.  Whatever is in the water (it definitely isn't pure) causes chills, so they gave me a warm blanket, which I kept wrapped around me while I waited.  The tech said it would be 30 or 40 minutes, but it was well over an hour before I was called--and there was no magazine dated later than last October.  (The fall football issue of Sports Illustrated didn't even mentione Notre Dame, and the Sooners were optimistically picked at #5.)  Several people were called for scans and x-rays before me, though I wasn't quite sure where they were coming from.  By this time, I was exhausted, and I think I nodded off a couple of times.  The scans themselves don't like long--first they do them without contrast, and then they inject a fluid that makes you warm and your mouth taste metallic into the port and run them again.  The machine says in a booming voice, "Breathe in.  Hold your breath.  Breathe."  And there are two happy faces, one green with its mouth open; another yellow with its mouth shut and its cheeks puffed out for further guidance.

Then it was time for my bone-strengthening shot.  The third floor is devoted to chemo treatments; many people must spend hours there.  All I needed was a shot, but they too were running late.  They took my vitals (all normal) and finally the nurse arrived with the needle.  Because of the volume of fluid they inject, the nurses always want to do it my stomach, but since I started taking anti-coagulant shots every morning in my stomach about 18 months ago, I don't need another injection there, so they do it in my arm.  I can't say it's painless exactly, but it's not too bad.

By this time it was noon.  We had hoped to call some friends in KC to see if anyone was free for lunch, but the morning had taken much longer than anticipated, and I was tired, so, after sneaking up to the roof for a smoke (the Cancer Center, like the Med Center, is a smoke-free campus; at the Med Center, you can always see a whole line of nurses, patients, and family who have walked across State Line Road into Missouri and are puffing away), we just went to the cafeteria for lunch.  And then at 1:20, I had my vitals taken again (I'd lost 7# since three months ago, not exactly a surprise) and then had my consultation with Dr. Vanveldhuizen.  Well, not really with him yet, because again I saw still another Fellow to go over the results.  This one was Indian, and though he was quite well informed, I sometimes had difficulty understanding him.  When his first question was whether I had seen the surgeon, Dr. Holzbeierlein, whom we had seen about three months ago, I knew the news wasn't going to be completely good.

The primary tumor in the kidney had grown another 20+% to about 5 cm. (approximately two inches).  So once more on the table was the discussion about changing to a different chemo drug and about having surgery.  On the plus side, however, the various tumors in my bones and organs had not grown.  The Votrient seems to have lost some of its efficacy against the kidney tumor, but not with the others.  Dr. Van arrived, and we went over the options.  Because switching chemotherapies (probably to Sutent, the other most current drug for kidney cancer) involves so many unknowns--would it be more effective both against the kidney tumors and the others?  what would the side effects be and how well would my body tolerate the switch?), we decided to continue with the wait and watch option.  The same is true of surgery, which wouldn't prolong life, but might make the end less difficult, but which also had its own dangers.  I had been pleased when we had talked to Dr. Holzbeierlein that he didn't strongly advocate surgery, as I thought a surgeon might.  On the Votrient, I've lived twice as long as the initial prognosis and am still doing well, so I hate to abandon it.

As far as the side effects go, Dr. Van prescribed a medicine that is supposed to help increase appetite.  (Kansas, needless-to-say, doesn't have medical marijuana.)  Of the anti-diarrheal medications, I had ruled out Lomotil, which didn't seem more effective than Imodium or tincture of opium, which seemed to increase the nausea, and which dried my body out so much that even my eyes were scratchy.  After I ran out of the tincture, I took Lomotil for a couple of days before returning to Imodium, which has been effective for the last two days.  Now that I've tried Lomotil, Dr. Van assured me that the insurance would pay for the tincture of opium, so I have a prescription for that.  I told the Fellow that the prescription needed to be for a certain number of milliliters, not for a "bottle," which was too imprecise for the pharmacy.  A normal bottle is 100 mL, and it wasn't until later that I noticed he had written it for 473 mL--a strange number, but also half a liter, which seems excessive.  I'm not sure what Walgreens is going to make of that.

Both Mohamed and I took the news calmly.  I don't think either of us was surprised by the tumor's growth, given my lack of energy the last few weeks.  I'll add one more pill (for my appetite) to my plastic box full of pill bottles.  Mohamed at the wheel, I promptly fell asleep.  One moment I was watching KC disappear in the rear view mirror, the next we were entering Topeka.  And then I slept another 90 minutes once we got home.  For the next few hours, I felt pretty energetic and had a decent appetite for dinner, but at 10 o'clock, ready to enjoy "Real Time with Bill Maher," I couldn't stay awake any longer.  I managed to summon my strength to record it, and now it's time for "Up with Chris Hayes," so two hours of that, followed by an hour of "Real Time" should give me my political fix for this morning.  I slept well, and I've taken my dozen pills for the morning.  Once Mohamed awakes, I'll get another shot in my tummy.  And, an hour having passed since I took the Votrient, now I can have something to eat--a bowl of cereal and a croissant are waiting for me in the kitchen.

Yesterday got off to a joyous start with hours spend in front of the TV watching the Inauguration--from the moving official swearing in to the balls with Michelle Obama in her stunning gown by Jason Wu and Jill Biden in hers by Vera Wang (I am gay after all), from the President's Inaugural speech with its explicit reference to gay rights to the benediction, which did the same, through gay poet Richard Blanco's poem, from the Brooklyn Tabernacle Choir, through Kelly Clarkson, to Beyoncé's beautiful version of the national anthem--the day was one to make Americans proud and hopeful. 

I took a break, however, for one of my guilty pleasures: ABCFamily's "Switched at Birth."  Until I read about the show by the New Yorker's uneven television critic, Emily Nussbaum, I had assumed that it was yet another inane reality show.  It's not.  It is in many ways a conventional TV drama with a nightime soap opera feel.  But it has two elements which make it interesting.  First, it's set in Kansas City, and although except for a few references to the Plaza or to UMKC, the city doesn't really have much of a part in the show, there are frequent background shots of KC.  (In her review, Nussbaum bizarrely says that the show gives a glimpse into the KC art scene.  What she meant by this I have no idea.)

The real distinguishing quality of the show is that one of the sisters who was switched at birth is deaf, and the series has a number of deaf characters and gives a rather serious look at Deaf culture with its pride, but also its exclusivity.  When two deaf characters are communicating, the viewer can hear only the ambient sounds and must follow by reading subtitles.  Among the hearing characters (the 'hearies' in the jargon of Deaf culture), there are some, like the other switched sister, who sign moderately well.  Others make a limited but well-meaning effort, and some cannot sign at all.  Even among the deaf, Emmett signs rather differently--just as fluently, but with more function words and fingerspelling than one normally finds in ASL.  My guess would be that the actor was probably mainstreamed rather than going to a school for the deaf.

In the 1970s, I studied sign language for a while and then taught an introductory course with a deaf woman.  Teaching was a frustrating experience because most of the students took the course because they thought signing was "beautiful" and after a semester or two, they'd be able to sign fluently.  But ASL is a fully formed language of its own--with its own "phonology" and syntax, as well as lexicon.  And just as one wouldn't take French 101 with the assumption that after a semester, s/he would be fluent, so too with ASL.  Most students disappeared quickly once they began to understand the intricacies of signed language.  I can still sign, slowly and with prompts for signs I've forgotten, but I can't read signing at all.  By the time I've figured out the first sign, the signer has finished a sentence or two.  Watching Switched at Birth makes me regret that I let my signing slip away.

Helen Keller was once asked which she would choose if she had a choice between seeing and hearing.  She chose hearing, which might suprise most of us who probably think that if we had to lose one sense, we'd rather save our sight.  But thinking about deafness, we have to make a distinction between those who are pre-lingually deaf (and who would generally prefer hearing to sight) and post-lingually deaf who already have the elements of language.  There are many misconceptions about deafness and signing.  One of the most common is the assumption that sign language is universal.  But that would be possible only if signing were iconographic and transparent, which it's not.  Although in some cases the signifier is obviously related to the signified and in a few other cases the sign is semi-transparent (a hearing person wouldn't comprehend the sign, but there is a connection that might be explained), in most cases, just as in all languages, the signified/signifier relationship is totally arbitary.  Just as spoken languages developed with completely different lexicons and grammars, so, too, did signed languages around the world.  American Sign Language has no relationship with British Sign Language; in fact, even something as simple as fingerspelling is completely different with the British using a two-handed system that completely baffles me.  ASL is, however, closely related to French Sign Language because it was the French who introduced signing in America.  I first realized this when I was watching a signed newscast in Paris and discovered that, while I couldn't follow whole sentences, I recognized familiar signs.  French fingerspelling differs from American in only two signs (h and t).

Like all languages, ASL has its own self-sufficient grammar.  It has dialects, and it changes through time.  It also has controversies.  The sign for black (the index finger drawn across the forehead) has always been neutral.  The sign for Jew, however, involves the gesture of stroking an imaginary beard, a sign that is also used for 'stingy.'  The sign for gay used to be, at least for some, licking the middle finger and smoothing an eyebrow.  Ironically, one of the controversial signs is that for deaf.  In Deaf culture, the relationship between deafness and speaking is a fraught one.  The sign for hearing is a small circular motion of the index finger lightly touching the lip, exactly the same sign for speaking.  The sign for deaf involves the index finger touching the lips and then the ear (or vice-versa).  During the 1970s, some in Deaf culture decided that that sign was inappropriate, since it implied a connection between deafness and speaking, so there was an attempt to introduce a new sign (hearing + closed) that involved touching the ear with the index finger, changing that handshape to a flat, open palm, and bringing it together with the flat open palm of the other hand.  The sign might have been logical, but it was also less efficient.  It involved a change of handshape, a larger movement, and two hands instead of one.  Just as in any language, efficiency trumped intentions, and the new sign never took hold.  Whenever someone signs 'deaf' on Switched at Birth, it's the traditional signed that's used.

Despite its many limitations and its conventional plotting, the series does provide a fascinating glimpse into another language and another subculture.  In last night's episode, the Daphne, who is deaf but who can read lips, says that you can't imagine how tiring it is to try to read lips all the time.  This series, with its complex (for TV) examination of Deaf language and culture, is a pleasure I feel only moderately guilty about enjoying.

Normally, my next blog would be Friday, but Friday morning we go to KC for the day-long battery of tests, so I'll wait till Saturday, after I've had the tests and consultation, to post the next entry.

My pessimism about the possiblity of gun regulation seemed momentarily unjustified this week given the speed with which President Obama acted on the issue.  True, the 23 executive orders that Obama signed were generally bland enough--discussions and committees and research.  But the proposals to Congress, while expected, at least kept the focus where it belongs: on guns.  Changes in the treatment of mental health issues are obviously important, but they deserve a separate and more dispassionate examination.  Violence in the media and in video games may be worth a second look (though citizens of other countries watch violent movies and play violent games, but those countries don't have anything like our rate of gun violene), but in this context would only serve as a distraction from the real problem: weakly regulated access to guns, including assault weapons.  But my hope was short-lived as the pro-gun forces and the politicians in their thrall leapt in the argument.

Fox News was apoplectic, of course.  On the first day, Obama was compared to Hitler, Stalin, Mao, Pol Pot, Hugo Chavez, Castro--just throw in the name of any dictator you want.  He was a tyrant, a would-be king, and certainly not a true American.  He was depicted as tearing up the Constitution, and the Second Amendment was ritually invoked over and over.  Politicians who I had assumed might be reasonable on this issue revealed themselves as adamantly opposed to any sort of regulation.  Yet under the noise, there was something curiously schizophrenic about the arguments of the pro-gun lobbies and their spokespeople.  Almost totally missing from the fear mongering about the government coming after "our" guns was the traditional appeal to hunters and sportsmen.  This time the argument had a distinctly paranoid tone with a vision of a dystopian future in which assault weapons were the citizens' remedies of last resort.  The slippery slope didn't lead to confiscation of rifles and shotguns, but to armed resistance to the government.

When Justice Scalia wrote the majority opinion in Heller v. District of Columbia, most of us thought the decision was disastrous.  For the first time, the Supreme Court overturned a ban on handguns (and regulations about how guns should be stored) by citing the Second Amendment and divorcing the first phrase about a well-regulated militia from the rest of the very short Amendment.  The first twenty pages of Scalia's argument were spent in arguing that the first phrase was "purposive" and neither enlarged nor limited the scope of the "operative" clause of the amendment.  Scalia is not an originalist in the same sense that Justice Thomas is, but the support for his argument was historical, citing such factors as alternatives to the final wording that didn't include language about militias and state laws following the adoption of the Constitution that explicitly affirmed the right of individuals to bear arms.  The majority opinion struck down the District of Columbia's regulation of handguns and their regulations on storing them, but more importantly, it seemed to imply that states and cities had little leeway in gun regulation.  It was, it seemed, a discouraging break with previous interpretations of the Second Amendment.

Yet there were some peculiarities in the case and its argument.  There were many amicus curiae briefs filed, but the NRA was strangely late in filing one.  One reason for their indecision might be that they had won themselves out of existence.  If gun ownership was Constitutionally guaranteed, then what was the purpose for the NRA to exist?  Although once their focus had been on gun safety and education, since the 1990s, that focus had shifted and the tone become more hysterical.  But now their slippery slope argument no longer had any validity.  The government wasn't coming--and couldn't come--for your handgun or rifle.  And the decision was less sweeping than it first seemed.  Scalia and his majority colleagues made it explicit that certain regulations are permissible.  Relying on his historical and conservative approach, Scalia said that "longstanding" prohibitions on felons or the mentally ill having access to weapons are valid, as are proscriptions that ban carrying firearms in "sensitive places," such as schools and government buildings.  Perhaps the part of his discussion that most alarmed the pro-gun lobby derives from an earlier (1939) case, United States v. Miller, which held that the amendment applied to those weapons 1) in common use, 2) for lawful purposes, 3) at the time.  Scalia was at least (for once) consistent in his historical approach, and it is clearly the third of those limitations that most upset the pro-gun lobbyist and, inadvertently perhaps, gave them a raison d'être for continuing.  Clearly, Madison and Jefferson were not talking about AR-15s and ammunitiion clips with dozens of rounds. 

It's why, I think, in all the discussion by Fox News and others of the Second Amendment, the most important Supreme Court decision on that issue is never mentioned, despite its seeming support for their side.  It's why they no longer talk about the rights of hunters.   There's no longer the pretense that the government will take your handguns.  There's nothing left but to frighten people into survivalist mode. 

Heatlh matters--part deux.  One more entry on the ups and downs of the daily routine.  When I last posted, it was Sunday morning.  I had gotten up at 6 to make an emergency trip to the bathroom, and then a few minutes later, I had vomited--luckily, before I had taken all my morning pills.  By the time I finished writing, I had to go running back to the toilet.  Friends were coming in from Kansas City at noon, but as I sat waiting for them, I kept falling asleep--short naps, but enough to worry me that I wouldn't be up for the visit.  The short bursts of sleep seem to have helped, however, and when Mark and Noel arrived, I was feeling peppy.  They had just returned from Paris and brought us TEN boites/bocaux of confit, terrines, and rillettes--an extremely generous gift and one that I know will give me an appetite and variety in what I eat.  We went out for brunch, and everything was fine till we were in the car driving home.  I made it home in time, but it's embarrassing to have to keep leaving the guests.  Three hours after they arrived, we had said good-bye, and I was in bed, deeply asleep.  That's what a typical day is like these days: quick successions of ups and downs.  I don't remember what I tried to eat Sunday evening, but it wasn't much.

Monday morning was worse.  I think I jinxed myself by what I wrote on Sunday because this time, awakened by my stomach's gurgling, I tried to rush to the bathroom, but I didn't quite make it.  So much for laughing at jokes about Al Roker.  It's not fun at 5 a.m. to deal with this, but nothing is potentially more humiliating and frightening--and discouraging--than the thought of public incontinence.  Ir's embarrassing even to write about, and I debated whether to include it in a blog that seems to comprise an inordinate amount of discussing bed and bath, but I want to be as honest as possible.  My intake for the day consisted of a bowl of cereal, two pieces of toast with rillettes of pork, and another bowl of cereal for dinner.  I dozed off several times and didn't have enough energy to do anything except stare mindlessly at the TV.  The tincture of opium--no matter how much I had hoped for different results (and from enjoying being able to ask for my opium at Walgreens)--doesn't seem to be having any positive effects.  It's also much less convenient than pills, which I carry with me when we leave the house and the dosage of which I can juggle as circumstances change.

And then, after two miserable days, yesterday was much better.  Yes, the day was bookended by trips to the bathroom and punctuated by a 2½ hour nap in the afternoon.  But for the rest of the day I had a good appetite and lots of energy.  Food actually looked and tasted good.  I had a plateful of sushi for lunch, followed by a sticky bun (no joking) for dessert.  And I finished off a jar of rillettes of pork on a croissant for dinner. 

These three days may have more extreme than most, but they illustrate the wild variability of how I feel, the unpredictability of one hour or one day from the next.  Today has started well, but the frustration is in not knowing how long that will last while knowing that no amount of will can change the day's trajectory.

One of the consequences I had forgotten about of entering the new year, is that Medicare Part D begins its accounting from scratch.  I get to the "catastrophic" phase, where I pay 5% for drugs, quite quickily, but now that it's January, I'm back in stage one.  Yesterday I picked up some prescriptions, including 24 needles for the morning anti-coagulant shot.  A 24-day supply costs over $3,000, so my share was nearly $800.  (How these figures are calculated is beyond me; I just accept whatever I'm told, since in the long run, I'll pay a certain fixed amount as I move through stage one, the doughnut hole, and into the last phase.)  The total bill was nearly $1,000.  I also phoned the special pharmacy for the chemotherapy.  The pills for a month cost over $6,000, my share in phase one coming to $2,300.  My first reaction to shelling out $3,200+ in one day was to wish my debit card was racking up more enjoyable purchases.  My second thought, however, was once again how insane our system is.  What if I weren't old enough for Medicare or had been feeling good and didn't want to spend the extra money on Part D coverage?  Each morning shot costs over $100.  The small package of one small bottle of pills that will last a month that UPS delivers today is worth $6,000.  Although Medicare Part D is far from perfect, what choices do people without insurance have to make?  Entitlement (how the name already prejudices the discussion) reforms have to be on the table at some point, but not hurriedly as part of the current Washington politicking.  Social security is healthy for many years to come.  Medicare is more efficient than private insurance policies and still has another decade of health, and the Affordable Care Act should bring reductions in Medicare costs.  This isn't the time for panicked (and panic-inducing) debate.  This is one can that deserves to be kicked down the road (I don't watch all those TV debates without picking up the clichés) until reasoned and reasonable discussion can take place.

Health Matters.  I'm going to blame this entry, which may sometimes be repetitious, on some friends who suggested that I should spend more time talking about the current state of my health.  I haven't tried to avoid what it's like living with cancer.  In fact, I've tried to provide regular updates, and, both in the blog and in conversations, I try to be matter of fact about it.  I don't want to avoid the topic, but unless there's been a significant change, after a brief discussion, I'm ready to move on.  If there's nothing new to say, why say it yet again?  The constants remain constant, and there are so many variables that--and this is extremely frustrating--it's hard to assign cause-and-effect results.  It's hard to know what changes are because of specific, non-cancer related events or which are just the results of being a 67-year old who smokes and who sits too much undergoing the natural aging process.

The constants remain constant, even in their inconstancy.  How good any moment is, how much energy I have both vary from hour to hour, from day to day.  One minute I'll be congratulating myself on how good I feel, the next I'll wake up to find Mohamed taking a picture of me, mouth open, eyes shut.  One day will be generally good; the next surprisingly not so.  I've taken chemo every day for the last 18 months, so I've become inured to many of its consequences.  I know that by late morning, I'm going to fall asleep.  I know that almost every afternoon, I'll sleep deeply for two hours.  And I know that if social events, which are always energizing, are scheduled, I'll need to plan my naps.  Luckily, falling asleep is never a problem. 

Food is a trickier problem.  Most of the time, I have no appetite.  Something that tasted good yesterday is unappetizing today.  Before every lunch and every dinner, Mohamed asks what I want to eat, and too often, the answer is that nothing sounds good.  (Sushi is, as I've often written, the one exception; I can almost always make it through a plate of sushi.)  Going to a restaurant has seemed less attractive lately as well.  We run through the list of possibilities, and none of them sounds good.  We used to go out once a week for a steak dinner, but the last time, I started the steak and promptly became nauseated.  For the moment, steakhouses are off the list, which in Topeka, isn't that long to begin with.  At best, I can make it halfway through the plate (which, given American serving standards, is probably sufficient).  The servers are always asking whether there was something wrong with my meal.  At my last Med Center weigh-in, I'd lost only 10# since the beginning of all this, but, much to Mohamed's chagrin, I think I've lost more since then.  My face looked a lot fuller in pictures from a year ago than it does now.  And now that it's winter, only I can see my skinny white legs and arms.  ("They will say, how his arms and legs are growing thin.")  But the changes are, I think, not all that great.  Friends who see me regularly always say how good I look, so perhaps our concerns are somewhat overblown.

The diarrhea and nausea are the other constants.  If I took enough Imodium, it worked pretty well--not perfectly, but well enough that when the doctor asked if I had problems with incontinence, I, unlike Al Roker, could say no.  There have been some awfully close calls, however, and certainly the fear of loss of control is a major worry.  Before the insurance company would pay for the tincture of opium, I had to move from the OTC Imodium to an inexpensive prescription drug, Lomotil.  I tried that for a few weeks, and it seemed about as effective as Imodium, but during the time I had more frequent nausea.  Whether the Lomotil caused (or even increased) the nausea is unclear.  Causation is hard to prove.  For the last week, I've taken the tincture of opium, which I paid for myself ($125 for a ten-day supply), though I think, if it's effective, the oncologist can make a successful appeal to the insurance company now that I've complied with their directive to try Lomotil.  Like the other treatments, it seems to be fairly effective, but not the panacea I'd hoped for.  I got up at 6 this morning because I needed an emergency trip to the bathroom.  Twenty minutes later, I was back again.  And in the meantime--and this was a morning first--I had thrown up.  I'll stick with the tincture for a while to see how my body adjusts to it over time.  In addition to how debilitating nausea and diarrhea are physically, it's also tiring just to try to figure out (to say nothing of writing and reading about) what's working, how it's working, what its consequences are . . .  Anyway, it's fun to say I'm taking opium, though I haven't experienced any revelatory (or even banal) visions.

Sudden problems are also confusing.  A couple of weeks ago, I seem to have sprained my right wrist.  The most logical explanation is that I usually have to push myself up from the couch with my right hand (the left arm works well these days, and it doesn't cause pain, but it's not good for bearing a lot of weight) and that I had twisted or strained the wrist in one of my many pushes.  I wore a brace on my hand for a week, and now it seems fine.  But for that week in the back of my mind, there's was always lurking the fear that it was more than a sprain, that something more serious was going on. 

In general my spirits remain good, and I can always pull myself together when friends come over.  I think I'm as engaged and lively as ever.  Over the last few weeks, however, going out has often seemed more trouble than it's worth.  We went out for about 90 minutes last week--to the pharmacy (a very frequent destination), to the bank, and to a restaurant.  I ate half of my food and then rushed to the bathroom.  And then I was very happy to return to the couch or the bed.  Is this seeming lack of energy meaningful?  Or is it just that it's winter, and the short days and cold temps make a clean, well-lighted (and warm) place more attractive than they'll be in a couple of months?  Very uncharacteristically, I haven't even started a new book in a couple of weeks.  I browse through the Amazon best-sellers and personal recommendations, and nothing looks good.  I run through the list of classics that have given me pleasure in the past or that were on my to-read list, and I can't settle on anything. 

So that's the state of my health--both physical and pschologically--today.  We go back to the Med Center for the whole battery of tests of the 25th, and then I'll know more about the actual cancer rather than just the consequences of treating it.  Later today, some friends from Kansas City, who have just been to Paris, are coming in for brunch.  In addition to our having a fun conversation, the day will be even brighter because they're bringing me some authentic French food.  I requested gesiers (duck and goose gizzards preserved in fat), perhaps not the most healthful food, but something I know I'll enjoy, and since last time, Mohamed took one bite and said the rest were for me, I can look forward to devouring the entire batch.  I wanted to ask for foie gras, but since these are gifts, I didn't want to sound too greedy.  So I suggested a rabbit terrine.  My spirits have already surged at the thought of good talk and good food. 

Last week's New Yorker has a lovely essay by the gay classicist, translator, and essayist Daniel Mendelsohn on his unlikely correspondence with the popular writer Mary Renault, herself a gay novelist who often wrote about ancient Greece, books which had very openly for the times gay characters and themes.  In 1976, when he was fifteen, Mendelsohn wrote her a fan letter, which she answered.  He wrote again, and again she answered, though telling him that this was her last response.  But later that year, she sent him a Christmas card, and the correspondence commenced again and lasted till her death in 1983.  Among Renault's circle of friends in South Africa, Mendelsohn became known as "her American boy."

Story City, the town with a population of 1500 where I grew up, had a public library (as well as a movie theater, two parks, a restored carousel, a swimming pool, tennis courts, and later a nine-hole golf course).  The library was housed in the same building with the city hall, the fire department, and the jail.  If you needed a restroom while you were at the library, you had to get a key and use the one in the city jail, which was always unoccupied.  The library was divided into two sections--half of it was for kids and had the reference books; half of it was the "adult" section.  For Bertha Bartlett, who ran the library, "adult" meant thirteen--and no one under thirteen, no matter how much he or she argued, could cross the invisible line.  Another of Bertha's rules was that you couldn't check out more than two books at a time.  For years, I thought that was some sort of cosmic law, and I remember the first time I visited the library at college and how amazed I was to see people checking out armloads of books.  When the magic day came and I turned thirteen, I entered the adult section and checked out two books: a collection of Sherlock Holmes stories, which was a great disappointment, and From Here to Eternity, which was not.  It was long, engrossing, and violent--and it was the first book I ever read that had a gay character.  I remember seeing the many novels by Mary Renault on the shelves, but I didn't know who she was, and she went unread.  I still wonder, however, what the Norwegian community thought about her books.  Someone must have checked them out because Bertha ordered each new novel as it was published.

I didn't write fan letters often and not till later.  I wrote two to my hero, Pauline Kael.  She answered both in handwritten notes, her scrawl hurried and difficult to read.  On both, she had put the stamp on upside-down and chastised herself for her haste in being so careless.  I was happy to have the letters, but they had nothing personal in them, and after two exchanges I decided not to push my luck.  I wrote to Anne Tyler, who wrote back three times, each letter short but warm.  Later, I had a couple of exchanges with my favorite literary critic, Stanley Fish.   By the time we wrote, he was Dean of the Law School at Duke (a controversial appointment--a Milton scholar as head of a law school) and I was living with someone who was in the law school at KU.  Following Fish, I was interested in legal fictions (not in the negative sense), and I would send him cases I discovered in which the fictive nature of legal assumptions seemed particularly clear or interesting.  He always responded with cases of his own.

I had only two really satisfying exchanges.  The first was with Carol Burnett, who was scheduled to film a movie, partly shot here, co-starring Glenda Jackson and to be called Two Girls from Topeka.  I wrote inviting her to dinner (I need to check the date because I could cook absolutely nothing before 1982) and suggesting a sketch for her variety show.  She replied with a long, funny letter, telling me that the movie had been cancelled, but that if she was ever in Topeka, she'd take me up on the dinner offer (a safe acceptance) and saying that union rules prevented her from accepting ideas from non-union "writers," but that maybe she could come up with my idea on her own.  That was the extent of the exchange, but I loved her reply.

My longest and most meaningful exchange was with Joseph Heller.  OU had a series of visits by guest writers, and even though I was just a graduate student, I ingratiated myself with the professor ostensibly in charge and often got to shepherd the writers around during their visits.  Anthony Burgess and his cigar-smoking wife had dinner at my apartment.  I didn't cook, so it was pizza, but Burgess was extremely generous and good-humored throughout.  I got John Hawkes, then a cult author, into a fight at the Friendly Tavern in Noble, Oklahoma, both names that were too obviously ironic ever to be used in fiction.  The chair of the department told John Barth that the only reason I hadn't converted to Judaism was my fear of even symbolic circumcision--exactly the topic you want to be the subject of discussion with a famous author.  But the best experience, and the one that led to my only sustained correspondence with a writer, was with Joseph Heller.  Three of us were charged with taking him to the airport.  His plane didn't leave till late afternoon, so we got to spend the whole day with him.

We decided that it would be a good idea to get stoned with him, though how we were going to introduce the idea wasn't at all clear.  We finally chose to be "casually" smoking when we picked him up--in a VW van, of course.  The van was filled with smoke by the time we arrived at the Holiday Inn.  Heller took one sniff and began singing Cab Calloway's "Reefer Man."  We passed him the joint, and we all spent the rest of the day very happily.  Heller was interested in trying acid, and I was the only one of the three who had done LSD, so we had a long discussion (though not necessarily a coherent one) about its effects.  Once back in New York, Heller wrote the first of many letters, saying that if he decided to try acid, he'd like to come back and do it with us.  He typed his letter and wrote that not even among his closest friends in NY would he feel as relaxed and be able to drop his "very deep inhibitions."  On second thought, he crossed out that phrase and penciled in "the deepest of [his] inhibitions."  Like Mendelsohn, I was awe-struck by the meeting, by Heller's generosity (he offered to help any of us find a position in New York), and by his letters.  The correspondence eventually ended, but I've dined out on the story for the last 40+ years.

Two unrelated notes (well, perhaps the first one is related to the last story):  the insurance company still will not pay for the tincture of opium, though the intermediate step of Lomotil hasn't worked well at all, so I decided to spring for a partial fill of the prescription--$125 for 25 mL--just to see whether this will be more effective.  I took my first .6 mL this morning.  Here's hoping.

Among the news of the performers for Obama's second inaugural (Beyoncé, Kelly Clarkson, James Taylor), there was also news of the poet chosen:  Richard Blanco, who is, in addition to being a poet, a gay Cuban-American.  It's only Democratic Presidents who have chosen to have a poet read at the inauguration.  First of course was JFK's choice of Robert Frost.  I still remember that January day in 1961.  I was a sophomore in high school, and we were all gathered in the auditorium to watch the event.  Frost was old, the wind was blowing his hair in his face, and the bright sun made reading the poem he'd written impossible, so he recited instead "The Gift Outright."  Clinton had Maya Angelou and then the Arkansas poet Miller Williams, better known for me as the father of Lucinda Williams, one of my all-time favorite singers and a fine wordsmith herself.  Occasional poems are usually not very good ("The Gift Outright" was certainly much better than what Frost had written for the occasion), but here's hoping again that Blanco avoids the snares and breaks new ground for his poetry as well as for his ethnicity and orientation.

Saturday's New York Times had an opinion piece, "The Blessings of Atheism," by Susan Jacoby, who is writing a biography of Robert Ingersoll, "The Great Agnostic."  Jacoby's main point is to counter arguments that atheists have nothing to offer when people are suffering.  Unfortunately, her solution is muddled and unsatisfactory.

She brings up the central problem for religious people: why does God "allow" so much suffering in the world.  One of my hobbyhorses is the wishy-washiness of modern Christianity, which is perfectly willing to ascribe good things to God's clear purpose and power, but bad things to his allowance.  Musicians and athletes seem particularly prone to public professions of God's interest in their performance.  Yesterday, the Ravens' Ray Lewis spent the first part of his post-game interview praising God for his perfect timing in Lewis's own career and the Ravens' victory.  But when it comes to suffering, God seems definitely less active.  Like Rabbi Harold Kushner, one can decide that God cannot be both all-good and all-powerful (Kushner sacrifices all-powerful), but the most common fallback position is that God's ways are inscrutable (when we don't like the consequences, though comprehensible when we do), and we just have to accept our inability to grasp them.  I don't understand how that provides consolation while suffering continues unabated, but it seems to be the best religious people can do.

Jacoby, however, wanders off in two directions.  First, approvingly citing Ingersoll, she argues that there is no difference between agnosticism and atheism.  I'm not sure what that has to do with her point, but the difference seems to me significant, as the etymology of the two words makes clear.  An agnostic says that s/he can have no knowledge of whether God exists or not.  Religious belief, therefore, remains on the table.  An atheist has concluded that there is no god; religion is no longer a subject of debate or even inquiry.  Football victories and human suffering are both caused by natural agencies--and that's that.  We can focus on what can be changed, ignore or bemoan what can't, but stop the futile search for final causes.

(I remember a particularly weak essay by Clarence Darrow, "Why I Am an Agnostic," that was reprinted in the first text I ever used for freshman composition.  Darrow used a stipulative definition of agnostic--a doubter--and concluded that since we all doubt various beliefs, we are all agnostic.)

Jacoby's main point is that atheism does have something to offer, both for private suffering (in this case death) and at moments of national grief, such as Newtown.  Borrowing from Ingersoll ("the dead do not suffer"), she concludes that an atheist can comfort the bereaved by saying that while death doesn't open the door ot another life, it offers "perfect rest," the end to suffering.  Cold comfort indeed!  While it's certainly true that death may be a boon for some, the twenty six- and seven-year olds who died at Newtown weren't suffering, and it's an insult to suggest that the notion of perfect rest is consolation and comfort. 

What does atheism have to offer at such moments?  Let's have the courage of our convictions and answer truthfully: not much.  We don't have the bromides of "they're now with Jesus or God or whomever" or "you'll be reunited in a future time."  We have nothing better than "I'm thinking of you" or "I'm sorry for your loss" or "I hope the memories of the good times will offer some consolation."  Sometimes, when I'm in a Whitmanian mood, his notion of the continuity--not in a supernatural sense, but simply that our atoms rejoin the rest of the natural world--of life is tempting.  It's then I think I'd prefer to be buried rather than cremated.  But those feelings don't last very long, and I don't think mourners are going to be comforted by quoting Whitman:  "to die is different from what any one supposed, and luckier" or "when I die, look for me under your bootsoles" or "as to you Corpse I think you are good manure."  No, Whitman is definitely not the poet to quote.  But the fact that we atheists don't have anything equivalent to the clichés of the religious doesn't undermine our sense of the world. 

To a more immediate point, although the "fiscal cliff" has been averted for the moment, there are more fiscal fights to occupy Congress, and then there are the fights over cabinet and judicial nominations, and perhaps as new business, the President and Congress will address immigration reform (if enough Republicans were frightened by the last election, they may even be amenable to structural changes), but when in all of this will there be the resolve to tackle gun control?  My sad prediction is that, despite all the talk in the days after the Newtown shootings, the NRA will re-assert its power, and Congress will let gun control proposals languish and eventually die.  Now that's manure.

Two sets of friends are going to Paris in May, and I've suffered a bout of nostalgia in writing both of them with a series of tips: my favorite, non-touristy, authentically French, and relatively inexpensive restaurants, the best out-of-the-way museum, how to get into the Louvre without standing in line, and the cheapest (less than a euro) and most practical first purchase.  My passport expires in March, and since I haven't been farther than Kansas City in the last two years, it seems unnecessary to go through the hassle of renewing it.  Still, not having a passport seems like a surrender.

A couple of weeks ago, I mentioned reading Ian McEwan's unsatisfactory spy novel, Sweet Tooth, set in the days when Communism was our chief fear and enemy.  Thinking about those days brought up another kind of nostalgia about my two years teaching in Communist countries.  In 1979-80, I taught in Skopje, Macedonia, then a part of Yugoslavia.  It was a watershed year, as midway through, Tito died, and despite his attempts to insure that the country would stay together after his death, Yugoslavia has passed into the history books.  When we arrived in Belgrade for orientation, a Yugoslav official told us that we should feel free to talk politics--with four exceptions, four assumptions that underpinned Yugoslav society and that were not up for discussion: the unity and brotherhood of the Yugoslav people (it didn't take many years to see how flimsy that assumption was), the "third way" of an independent foreign policy for the non-aligned nations, Tito's economic version of socialism, and the personality of Marshal Josip Broz Tito.  That didn't seem to leave a lot of room for discussion, but we went with it.

There were only seven other Americans in Skopje: the director of the American Center and his wife; Larry and Suzanne, the American couple I lived with; Jack, who had come to Macedonia to be a writer, and two Mormon missionaries.  Sweet Tooth is about spies, and one of the questions both here and later in Bulgaria was who was a "spy" or at least employed by the CIA.  We could rule out the Mormons, who were having a miserable year.  Their language training hadn't been effective, they were always short of money, and they had little success in a country that was officially atheist and historically Orthodox.  We assumed that Tom, the American Center director, was, but he was so blatantly American that it was hard to imagine him doing undercover work.  He drove a huge Buick station wagon that was almost impossible to navigate in the small streets of Skopje.  He and his wife went to the small Catholic church (the home of Mother Teresa), where the women sat on one side and the men on the other; he called attention to himself by insisting that his wife sit with him on the men's side.  The only time I was conscious of sometimes being followed was on a trip with Tom and his wife into Kosovo, already a delicate region, to visit a remote monastery.  A car seemed to be trailing us and finally passed us and stopped the car.  We had missed the turnoff, the two men said, and we needed to turn around.  We did.  They did.  They stayed in the monastery with us and then suggested that we return directly to Skopje.  Jack was more mysterious.  Why would someone move to Macedonia to become a writer?  He didn't seem actually to spend time writing, and he wasn't doing travelogues.  What did he do with his days?  But that led to a larger question: if indeed Tom and/or Jack was CIA, what were they supposed to be discovering?  They didn't seem to be more plugged in to the local community than the rest of us.  Tom was certainly too conspicuous to be doing anything secretive.  Or did I have an exaggerated view of the CIA?  Were they just there to sniff out the general atmosphere?  Is that all that Intel on the ground really means?

The situation was somewhat different during 1995-96 when I spent the year in Sofia, Bulgaria.  Although the Berlin Wall had fallen six years earlier, Bulgaria had been slow to abandon Communist principles.  Finally, that year they did--with no preparation.  It seemed that in the fall, every night on TV there would be footage of the opening of a new private bank, complete with blessings from the Orthodox archbishop.  And then every night in the spring, there'd be footage of a bank failing (including mine), all the money having disappeared to Luxembourg or Monaco or some other safe haven and all the officials having disappeared as well.  New businesses were springing up, and although there might be absolutely nothing in a building, there was always a sign on the door saying they were insured.  What they were insured against was the insurance company, which would bomb or set on fire the new business if it refused to cooperate.  Those who had the debeli vrski (fat connections) in the old Communist system simply kept their powers, now in the name of capitalism.  The economy collapsed so fast that by the time I left, a full professor at my university, the most important in Bulgaria, was making the equivalent of $18 a month.

Since Sofia was the capital, there were more Americans there than in Skope, and once again, it was hard not to ask who was CIA and what they were doing.  One woman, who seemed to have no obvious purpose for being in Sofia, was a clear candidate, though once again, she made herself terribly conspicuous.  She lived in a large house, had had all of her furniture, including a piano and an American refrigerator, shipped to Sofia, and, although she didn't usually hang out with the other Americans, no one had any idea what she was really doing.  And then there was one of my best friends, who was ostensibly doing economic research, but didn't seem to spend a lot of time on that project.  Even though he and his wife were my best American friends, I couldn't ask.  He went on to governmental posts in Belgrade, Istanbul, and Montenegro, so at some point he was clearly not just a Ph.D. candidate.  But again, if either or both of these two were CIA agents, what were they supposed to be finding out?  What, if any, access to information did they have that the rest of us didn't?

It was and remains a bafflement.  Sometimes, though, I could amuse myself wondering if other Americans (and Yugoslavs and Bulgarians) were making similar speculations about me.  Why otherwise would I have bothered to learn Macedonian and Bulgarian?  They're not exactly practical languages in Topeka.  It was rather fun to think of myself as a suspected spy, genially teaching my classes and going to parties, but secretly doing whatever it is that spies are supposed to do.

HAPPY NEW YEAR!  
 

         ЧECTИTA HOBA 2013 ГOДИHA!

                  Bonne Année, Bonne Santé!

                                 CPEЌHA HOBA 2013 ГOДИHA!

I made it up till 11:38 last night, but having watched the ball drop in Times Square, I figured that was good enough.  I did wake up at midnight because a few fireworks were going off, and they upset Kimber, who had been sleeping next to the bed, but I wasn't lucid enough to tell her that it would be ok.  It snowed off and on yesterday, so this morning there are about three inches of snow on the ground, more than we had all of last winter (but not the two horrible winters before that).

I don't usually make New Year's resolutions but here are three for the new year:

1) Not to lose weight. 

2) Not to quit smoking.  There are few enough physical pleasures left, and I'm going to stick with my Camel Wides.

3) To be around a year from now to make resolutions for 2014.

As a new year starts, the cancer remains the most determining and defining part of my life.  It's easy to ignore the cancer itself, since it doesn't really manifest itself in the usual ways.  But I can't quite ignore it, since the consequences of the cancer (and more forcefully the side effects of the treatment) are too numerous to allow for denial.  My left shoulder is much stronger, but I start every morning with the reminder that I can't lift a gallon of milk off the top shelf of the refrigerator with my left arm.  My right hip is also better, and I walk with a cane only when I leave the house, just in case I encounter stairs without a railing.  There's no real pain, but there is discomfort.  I sit too much, and when I stand, I have to push myself up.  There are lots of things I can't do and lots of positions that aren't possible any more.  I've learned to compensate--or rely on Mohamed for help.  But the discomfort is a constant reminder that I'm not the active person I always thought I was.

I'm used to the gray hair, the most immediate and visible effect of the chemo.  And I'm resigned to having to take three additional pills to counter the effects of the chemo that raise my blood pressure.  I tried dropping one of the pills (on the suggestion of my cardiologist), but the blood pressure went right back up again.  The fatigue is more troubling.  I can manage four or five good hours in a row, but then suddenly the tide rolls in, and I cannot stay awake.  If we've got social events or doctors' appointments, I need to plan the sleep around the other activities.  I'm hardly a fun person these days, since even when I'm with friends, no matter how lively the conversation, after about three hours I begin fading.  Luckily, everyone is understanding, especially Mohamed, who must get frustrated with my twice-daily "I have to go to bed"s.

Probably most irritating, however, is my relationship with food.  My appetite (and my enjoyment of food) is severely limited.  Whenever we think we need to go out for lunch or dinner, we run through the usual list of restaurants, bemoan how limited our choices are, and then choose whatever sounds likely to be most appealing.  Once there, uncharacteristically, I change my mind several times since what sounds good one minute quickly loses its appeal.  When whatever I've ordered does arrive, after a few bites, it becomes an ordeal to actually eat the rest.  And then there is the diarrhea that makes going out more problematic.  The Lomotil seems marginally more effective than Imodium.  If, when a see the oncologist next on January 25th, we decide that the Lomotil isn't really a solution, perhaps the insurance company will approve the tincture of opium.  (It's fun to say both 'tincture' and 'opium.') 

I'm sorry to start 2013 with these paragraphs.  I always thought that I was defined by many traits, but however many others there are, it is the cancer and its treatment that now determines much of my routine, many of my decisions. 

On a lighter note: I'm always amazed that while I'm struggling to understand the lyrics of songs on the radio in the car, Mohamed not only understands them, but is singing happily along with them.  But this weekend, TLC's old "Waterfalls" was playing on TV, and Mohamed said that he didn't understand the song.  "Who is Jason Waterfalls?" he asked, thinking for all these years that the words were, "Don't go, Jason Waterfalls."  I felt better.