It is with great sadness to say that my husband Howard passed away Sunday March 5th, 2017.

To Howard,
Wish my tears can tell you how I feel. I miss you, and I miss your love and your kindness.
Mohamed


Howard Faulkner died March 5, 2017 from complications of kidney cancer. Dr. Faulkner was born July 14, 1945 in Ames, Iowa, and grew up in nearby Story City, graduating from Story City High School in 1963. A National Merit Scholar, he attended the University of Northern Iowa as an undergraduate, receiving his B.A. in English in 1966. Dr. Faulkner received his M.A. (1968) and his Ph.D. (1972) from the University of Oklahoma, where, in addition to his studies, he was a graduate assistant and special instructor.

He came to Washburn University in 1972 and spent his career in the English department there. He was director of the Master of Liberal Studies program and from 2006-10 chair of the English department. Dr. Faulkner took four year-long leaves of absence to teach abroad. He was a Senior Fulbright Professor at the Univerzitet Kiril i Metodij in Skopje, Macedonia (1978-79), at Sofiiski Universitet in Sofia, Bulgaria (1995-96), and at Moulay Ismail University in Meknes, Morocco (2003-04). In 1987-88, he was a guest professor at the University of Metz in France.

With his colleague Dr. Virginia Pruitt, Dr. Faulkner authored four books: two were collections of the professional correspondence of Karl Menninger, one was a collection of letters to and from Dr. Menninger when he was a mental health advisor to the Ladies Home Journal in the early 1930s, and the fourth was a critical edition of a novel and previously unpublished short stories by the American writer Belinda Jelliffe. He wrote a text for use in Moroccan universities on American culture and Rules of the Game, an introductory text on English grammar. Dr. Faulkner also published widely on American literature.

One of his special passions was travel, France being his favorite destination. Besides the year he spent teaching there, he spent numerous summers in Paris and end-of-the-year holidays in Metz. In his travels and teaching abroad, he also discovered a passion for languages.

Dr. Faulkner is survived by his husband, Mohamed.

A celebration of Howard Faulkner's life is scheduled for 5:00 p.m. Monday, March 27, at Bradbury Thompson Center on the Washburn University campus. Memorial contributions may be made to Save the Children, 501 Kings Highway East, Suite 400, Fairfield, Connecticut 06825 or at www.savethechildren.org.

hour of the wolf,

which was a movie by Ingmar Bergman about nocturnal sweats, a film I found profound and scary forty years ago, but about which I remember nothing now.  Now is 4.a.m., Thursday, February 16, and this is the third time in 24 hours I've tried to write this blog--to let everyone know how I was doing and to thank everyone who has sent their best wishes to me.

But for much of the time, my mind has been mush and I've been in the hospital and for all of that time I've been unable to stay awake to finish a thought--orally or in writing.  Last week, all of the "little things" (as opposed to the Big C) came together.  I couldn't eat, or even swallow. My left ear had lost much of its hearing.  I  had strong pain in my jaw and leg.  But most of all I couldn't stay awake.  Mid-sentence, mid-mouthful, mid-laughter, I wasn't following, couldn't comprehend, and then wss sound asleep,  Mohamed used to ask constantly about appointment--when, with whom, about what.  I couldn't understand how he couldn't remember.  Now he is charge of all of that.  I ask several times a day whom we see the next day; I am incapable to remember.  I know how frustrated her must get when the answer is no one--and still no one when I ask again six hours later.  So early next week we headed to the ER.  (He would say Monday; I would say Tuesday.  Trust Mohamed.)

I  spent four days and underwent every kind of test, several after only a few days since the last time: MRI (I'm getting better at these), CT scans, x-rays, and even a spinal tap.  The results were the same, ruling out metastasis of the cancer to the brain but supplying no answer to what the causes were or whether there was a connection between all the little c symptoms and those of the cancer.

The weekend was quiet, relieved by a second opinion that it was not brain cancer, but with a set of what appeared to be self-evident symptoms of a stroke. When I tried to smile at Mohamed, only the right-hand side of my mouth responded  I drooled out of the left hand 2/3 of mouth.  My speech was blurry and difficult to understand, saddening for someone who was paid for taking for 45 years of his life.  oI didn't stay in rhe hospital,, but I did get a diagnosis:. Bell Palsy.

Today, though I had better check with Mohamed, we'll see my GP's nurse, just to see how things are going, and the ENT doc,, my least favorite, probably to drill another drain in my eardrum and discharge the fluid there.

I've run out of steam.  I'll do a cursory edit, and then more soon about what's next.

winter of our discontent; discontent of our winter

Tuesday we went back for another session of physical therapy on my neck.  The therapist was the owner of the facility rather than the 20-question tech I usually have.  The guy was really strong, and where he worked, it was a deep massage--almost painful.  But he's afraid to work on the shoulder or on the back for fear of activating tumor cells, so although the therapy may help a little, it doesn't cover as much as I'd like. I've worn a neck brace several hours a day for over a month now.  I can't turn my head, having to turn my whole body, slowly, instead.  I'll do a few more sessions of therapy, but that should be enough.

I have kept thinking that as much running around in the car as we do, one of these days...   And Tuesday was the day that a very elderly farmer decided to rear end us.  I can't say he ran over to the scene of the accident, but he hurried as fast as he could because he didn't want us to file a police report.  He was too late.  He also was hoping he could convince the police that this was an old dent.  The police weren't having any of his story.  Luckily, no one was injured and the damage was minor, but a collision and the complications that follow weren't what we needed at that point.  The police were efficient and courteous, and my earlier fears about what treatment Mohamed could expected were unfounded.

Yesterday, it was a time for a return visit to Topeka Ear, Nose, and Throat.  Of all the doctors and facilities we have gone to over the last six years, this is our least favorite, and they are the least courteous.  They always act as if we are an imposition and they don't really have time to finish a consultation with us but need to rush off to someone else.  But my ear had continued to drain more than it should, and my hearing in the left ear was damaged.  We had a new doctor, but the old ways continued.  By now, the drain had come loose, so he just left it out.  He vacuumed a lot of mushy stuff, and then suddenly just quit and said to come back in two weeks.  It's still draining this morning.  I have drops that soften the mess.  But there's a bizarre feeling, and nothing much seems to have changed.  None of the other doctors or specialists act concerned, and Mohamed was feeling extremely frustrated in that no one seemed interested in putting the pieces to all these problems together--if indeed they do.

After that unsatisfactory appointment, we killed time with a Heath Bar Blizzard from Dairy Queen (me, not my more virtuous partner) before heading to an appointment with Dr. Hashmi, just for a consultation.  Weighing in, I had lost nearly 20 pounds.  The last time I had such a result, the fault was with the scale; this time, my appearance indicates that I really have lost the weight. But as always, Dr. Hashmi was pleased as the tumors have not grown or found new homes.  The primary cancer looked stable.  And then we began going through all the small problems that have made my life difficult--from the runny ears (they're still running) to bone pains to a month-long stiff neck.  We could adjust this, tinker with that.  Was I depressed?  We could add an anti-depressive.  But I wasn't really all things considered, so we'll postpone that for a while.

Then I could see that Dr. Hashmi was getting ready to bring things to a close and that Mohamed wasn't prepared to do so yet.  So he began asking more questions about how the pieces converged.  Wasn't there a pattern to at lease some of the symptoms?  And then Mohamed asked me to stick my tongue out, and we had an aha! moment.  I have a deviated tongue, and try to treat this fact with some respect, not with snickering.  And it's deviated to the left.  As are all other ear, nose, and throat symptoms.  I'm having trouble with too much saliva, and my speech is sometimes slurred.  The most likely cause is a small stroke, or a series of strokes.  (Having trouble speaking for someone who talked for a living is very strange.)  More serious would be a metastasis of the cancer into the brain.  But it does seem there is a connection between my brain and the scattered symptoms that have made the last few months so difficult.  And just pressing, pressing your doctor as Mohamed did can finally pay off.  Next Wednesday, I'll have a two-hour MRI on my brain and neck. 

The revelation was obviously not good, yet in some ways it's good to know what's going on rather than just treading water in a slough of uncertainty.

Wherel's Howard?

Easier to find than Waldo, I suspect--tuches firmly planted on new couch or at one of what seems numberless branches of the hospital's cancer center. 

The holiday season was pleasant, quiet with several visits from out-of-town friends.  We missed the ice storm that paralyzed so much of Kansas, but it's been gray and often rainy, so somewhat depressing as winter worms its way slowly through.  We gave ourselves a nice present for the new year.  We both spend a lot of time on the couch facing the TV.  We eat there, read there, write blogs there--and that's when I'm alert.  We had a sofa with a chaise longue on Mohamed's end, and it was nice looking and fairly comfortable, but it was too low to the ground to get out of easily, so we decided to replace it.  I could manage one furniture store a day, which turned out to be exactly one week's worth of venturing out.  Eventually we settled on one that represented everything I'd always been snobbishly condescending to: it's a reclining loveseat, and a power recliner at that.  It's got cup holders.  We stopped just short of the precipice and didn't get the most comfortable one that had noticeable stitching.  It is dark blue leather, and much to my surprise, it's not only comfortable (that's not the surprising part), but rather handsome.  It makes staying awake even more difficult.

Healthwise, while Dr, Hashmi may be focused on the big picture, more small problems at different levels arose, so we were back to visiting specialist after specialist, all of whom seemed to lack a gestalt, each of whom had a vested interest in his'her specialty.  The ear ache had continued unabated, so we went off to the hospital's ENT to see a new doctor.  The doctors for all of the last six years, have never had a problem with our relationship and have always treated us as a married couple, even before we were legally married.  They may have been curious, but they were also discreet.  Dr. Barnes was more direct: "Just what is the nature of your relationship?"  I said that Mohamed was my husband, and he seemed confirmed in his assumption, but added that he had been uncertain because of the "large disparity" in our ages.  He gave me an antibiotic, but I had tried that before with no success.  The problem, he said, wss that the ear wasn't draining, so the fluid would build up again.  His solution was to insert a drain in my ear ("the Bold Look of Kohler"); he drilled a small hole in the ear drum, put in the teeny drain, and watched the fluid run out.  It was only a little painful.  The drain should fall out on its own after a year or so, and then things should be fine.  In the meantime, the ear feels much better.

The next problem is that I've been having a lot of trouble swallowing.  I've been losing weight, and though it's not been too hard to find soft foods, they're still not completely satisfying.  I  can just chew and chew, it seems,, and the bolus, instead of diminishing, just increases.  Chewing is difficult, and I have hard time initiating swallowing.  So off to another division of the ENT, where I had x-rays of me eating.  The tech would give me food laced with barium, and we would watch me chew on the x-ray machine.  I mean, we'd watch on the machine; I wasn't actually chewing on the machine.  It was very very strange.  The suggestions seemed common sense (eat ground meat, drink a lot while eating) but there was no hint of a cause.

Finally, in a temporary answer to which muscle will hurt next, it's one in my neck.  I've been wearing a neck brace for the last several days, and we went to a physical therapist who has scheduled some meetings and a few mild exercises.  What he doesn't want to do, he says,--and who am I to disagree?--is to fire up too much muscle activity in the areas where the tumors reside. 

I think that's a pretty comprehensive look and what's going on.  The constant fatigue is like the basso continuo in the background--always there, droning on.  I've used up my energy writing this, and I'm sure it's full of typos.  I'll fix it tomorrow, so you can suffer through today and give yourself a break and wait for a more polished version.

Mohamed Gets His Green Card

What?  Is rhis a holiday repeat?  Didn't Mohamed get his green card a year ago?  Two years ago?  Nope.  Not a permanent one.  I thought I had explained all of this in blogs when the events--applications, acceptances--occurred, but lots of readers seemed confused, and I decided to wait till all was official to try to clarify matters.  I also discovered that despite all of the talk of immigration during the election, few people really understood many of the twists of the immigration/visa process.

If you want to come to the U.S., but do not plan to stay here, you'd apply for a non-immigrant visa.  The most common ones are tourist visas, student visas, and business visas.  As in all of what passes as the immigration process, the possibilities are often bizarre.  If we believe Melania Trump's story and time line, she got a visa that enabled her to model in the U.S. because there weren't enough native models. 

If you want eventually to immigrate to the U.S., the path leads through a green card or permanent residence.  Again, there are several paths that enable you to apply for the green card, the one in question here, the one that we used, is family member (in this case, husband) of an American citizen.  There are others, one of the oddest to me is the green card lottery.  Every year, an immigration committee decides what nationalities are underrepresented in America.  I perhaps oversimplify a bit, but they say, for example, "Hmmmm.  There are plenty of Bulgarians in the U.S., so they don't need to be eligible for the lottery next year.  But there aren't many Romanians proportionally, so we'll put them on the list."  For the next year, then, people in Romania who want to come to America can apply to the lottery.   As its name suggests, the lottery is totally arbitrary.  There is no question of merit or of having relatives here or any other rationale.  Many immigration attorneys are scam artists, and nowhere is this more true that with lottery attorneys.  There is nothing an attorney can do to aid an applicant, but no matter how many times and in what large type the USCIS tries to assure people that all this is arbitrary, no one believes it, and corrupt lawyers make a fortune being paid for doing nothing.  I taught in three relatively poor countries, and no student believed me when I said that s/he was throwing money away by paying a lawyer.

Mohamed came here on a student visa.  Pre 9/11, it was fairly easy to convert a tourist visa to a student visa or a student visa to one with green card possibilities.  It is much harder now, but marriage to an American is one way that remains (or being sponsored by other family members).  In July, 2013, Mohamed and I got married, and shortly thereafter we began the green card application.  This involves convincing immigration that the marriage is a real one, not a marriage of convenience.  We had to provide health forms, many, many financial forms, notarized letters of support.  This is the vetting--"extreme" or not--that exists today.  The application form itself is a bizarre concatenation of questions from the 50s ("Are you now or have you ever been a member of communist party?" or questions that would baffle even the sharpest of applicants ("Do you have special experience with explosives?").  There is an interview.  Gay friends who began the process at about the same time we did, had their interview first.  They said it was low-key, definitely not the way I'd characterize our interview with someone who seemed to have a giant chip on his shoulder.  His last words, not telling us whether we had passed or not, were, "Remember: 50% of all marriages end in divorce."

Still, we were given the green card--except that it is a conditional, two-year document.  After two years, we had to go through basically the same process to have the conditions removed.  So last February, we compiled all the same documents and waited for the acceptance.  After a few weeks, we received a form letter, saying the conditional card had been extended automatically for one year, while Immigration reviewed our petition.  It all seemed quite perfunctory, since we have been together over seven years and are together almost 24/7.  Our gay friends were on the same schedule, or so it seemed, and in summer they received the lifting of conditions and permanent green card.  We got nada.

Finally in October, we received a letter saying they needed more evidence.  There was a list of what we might provide, but it was what he had provided originally and then again in this application.  We filled out more forms and photocopied more documents.  And then nothing.  We were particularly worried about what would happen if the extra year expired.  We could in theory follow our case online.  For the original application, USCIS was very good at keeping the site and info updated.  This time nothing changed.  We called three times.  There were 240 minute waits to talk to a human (they call you back).  All three people that we talked to were non-native speakers, so it wasn't always clear what they were saying.  But it became obvious that though they were very friendly and willing to talk about procedural matters, they wouldn't talk about anything substantive.

The year of grace is nearly up. What if the sheriff of a nearby county thought Mohamed was speeding?  We're not exactly living in pro-Muslim atmosphere.  And then suddenly, about a week ago, the online status was updated.  And a couple of days later, it was updated again to say that on January 3rd, the new card had been issued.  And then today, the new card arrived.  A sigh of relief was heard throughout northeast Kansas.  The green card is finally permanent.  If Mohamed wants to become a citizen, he can start that procedure.  But if not, he can live here as long as wants with most, but not all (he can't vote, for example) of the rights of any other resident.  That may suffice.

Back to the cancer center,

this time for results of last week's blood work and CT scan.  The facility looked more crowded than usual, and our wait was longer, but we assumed it was because of doubling up from the coming two weeks of holidays.  In our case, though, the wait was special.  A couple of weeks ago, we had the worst winter weather of the past semester years, and Dr. Hashmi,, working his way tenderly over the snow, had fallen and broken his right arm.  So his Physician Assistant was working her shift and then in charge of the computer on his shift.

Mohamed and I are focused on the many problems and pains.  Dr. Hashmi was focused on the big picture.  Although there's nothing new here, he was wide-eyed over the fact that I am well into my sixth years with the stage four cancer and the chemotherapy.  "It's not that I'm minimizing your pain," he said, though it was exactly that that it felt as if he were doing, "but after all this time, the results are stable.  There's absolutely no growth in the cancers.  Most of the people I treat with Votrient, are 'miserable' after a short period of time, and we have to move on to something else."  So that was the good news: concerning the cancer, much has remained the same for all this time.

That's good news, of course,, but I still couldn't help worrying about the symptoms that remain.  I had lost 10# since the last visit.  That doesn't bother me too much, since the nausea has generally subsided.  I don't have a huge appetite, true, but I eat rather consistently.  The most serious for me, though, aren't the constant pains and the debilitating fatigue.  So we're adjusting the morphine (doubling the dosage0 and will continue with the Percocet.  We'll see how that works out.  And of course, there are two further side effects.  The increase in opioids means an increase in constipation.  And second, does this mean that there will be an increase in fatigue?  Yes certainly to the latter.  Is there nothing we can do about fatigue.  Those discussions have always centered on transfusions.  With a low hemoglobin and/or or, fatigue follows, and transfusions can do a lot to supply energy.  This time, however, without a second thought, both Dr. Hasmi and Ginger said "Ritalin."  So Ritalin us used to provide energy, a logical solution, though we'd never thought of it.  If after all these years something a common as Ritalin helps significantly, I'm going to be plenty pissed (and relieved).

Looking forward to:

Portland friends Joanne and Darrell sent two dozen oysters, which arrived yesterday and which I'm looking forward to eat tonight.  I never was very good at sharing oysters.

L.A. friend Jill sent a lovely gift basket of wine, cheese, crackers, soup--all ready for exploration.

K.C. friend T.J., whom we haven't seen in some time is coming in for lunch today, and tomorrow it's Scott, also from KC.

Our social life is improving.

Happy Hanukkah.   Merry Christmas!   And all the best of 2017!!

Love,
Howard and Mohamed     

politics and prose--proofread finally

So much has happened over the last two months, so much  left without commentary.  Surely I can do better than that.

Clinton Comey
Cozy Bear
Conway Bannon
A snuggling pair.

                                   An homage to what seemed like high art and wit 60 years ago:
                                            Trump Trump
                                            The magical suit
                                            The more you listen
                                            The more you toot.

Goldman Sachs
225K a pop
Advice benign
Why should she stop?
Over our head
Whatever she said
It's something we've heard
I'm so reassured.

                                            Perhaps we'd be better off with Mike Pence:
                                                  First agenda item defund planned parenthood
                                                  That'll teach them it's no errant good
                                                  Reparative therapy for sinful gays
                                                  We can turn them from their awful ways.
                                                  No beautiful wall with President Pence
                                                  Just a pretty but restrictive fence.

                          
Several months ago, I heard President Carter say that between Ted Cruz and Donald Trump, he'd rather the Democratic candidate ran again Trump because Cruz is an ideologue and Trump is more "malleable."  It was a dear, sweet, half-formed thought.  It would be nice if only those influencing Trump were progressive, though Lewandowski, Manafort,, Conway, and Bannon were hardly promising).  And now the malleable Trump has surrounded himself with one advisor more frightening than the rest..  In the short-run, conspiracy theorist Gen Michael Flynn is probably the scariest.  In the longer run, Energy Secretary-nominee Rick Perrry (let's just hope he forgets to remember which agency he wants to eliminate) and all the anti-Environmentalists at EPA are even more alarming.  As someone who spent his entire life in public education, I can't help but cringe at Amway heiress Betsy DeVos,, who has never spent a day in public education and who hates neighborhood schools, as Secretary of Education. 

I can't help but enjoy the parade of self-deluded "moderate" Republicans making fools of themselves--Mitt Romney, Rudy Giuliani, Chris Christie (aka, the Whore of Trenton).  But what was with Al Gore, who was practically schoolgirl giddy after his meeting, as if he had gotten major concessions from Trump--just before Trump nominated his let's abolish the EPA candidate to head the EPA.


The last few weeks have been rather bumpy health-wise.  There've been a couple of previously unscheduled doctors' visits.  For three weeks, I've had a severe earache.  The first nurse practitioner said that it was the Eustachian tube, and we'd have to treat it through the nose, a treatment that causes nose bleeds, something I don't want since it leads to the ER and  balloon or tampon up the nose for several days.  A week later, another suggested treating it as a nasal infection.  We're tr\ying that without much success. And then there was a pinched nerve in the neck--also very painful.  We took two weeks off from chemo, trying not very successfully to balance constipation from the opioids and diarrhea from the chemo.  We had blood work and CT scans this week, and next week there is a consultation with Dr. Hashmi.

And so it goes.

80 prescient years ago

When I was growing up in Iowa, I was fascinated by one of my mother's books, always there on the living room book shelf.  Written in 1936 by Sinclair Lewis, it was "It Can't Happen Here"--maybe in Europe where Fascism/Nazism were on the rise, but not here.  Not here until "Buzz" Waldrip runs for and wins the Presidency on a nativist, populist platform.  After an initial year or so of waning enthusiasm for Waldrip's series of failed promises, the country begins to disintegrate.  Americans flee to Mexico which Waldrip has singled out for attack during his campaign, as well as to Canada.  By the time the book ends, the country is in civil war.

Despite months of reservations, I had convinced myself by Tuesday night, that HRC was going to win.  I didn't even think it would be close.  And then I sat masochistically for four hours and watched as state after state went for Trump with pundits suggesting less and less realistic ways Hillary could still win the state.  What has happened to America after 17 months of pathological lying, misogyny, insults, admission of not paying taxes for two decades, boasting of sexual assaults...the list is almost endless that we elect a man like Trump as President?  What will happen with the Supreme Court, with the Paris climate agreement, with the nuclear treaty with Iran?  It can't happen here, eh?

Yesterday was the regular six-week visit to see Dr. Hashmi.  The cancer center was quite crowded and rather depressing.  Nothing much had changed.  Although I still have constant pain somewhat managed by the morphine and/or Percocet, his tack this visit was, "It's not ideal, but it's working."  Yes, the treatment for six years of kidney cancer has been keeping everything stable.  I wouldn't mind something a bit closer to the ideal--a little less pain, a few fewer grunts as I stand or sit.  I think I'll have to continue, however, with the present regimen.

a Leonard Cohen excerpt

from "Anthem"

                                  Ring the bells that still can ring
                                  Forget your perfect offering
                                  There is a crack in everything
                                  That's how the light gets in.

10//30/16 (expanded)

A whole month of silence--mainly because everything has remained pretty much the same.  The nausea comes and goes; the diarrhea comes and goes.   Some days I have an appetite; others the look or smell of food is nauseating.  Meanwhile, various parts of body scream out in pain, though there isn't any clear-cut pattern, and what hurts one day or refuses to function, is back in service the next.  There haven't been any appointments with the doctor, and there aren't any scheduled till the 9th of November.

Today--and most of the week--my appetite has been virtually nil, a fact that scares Mohamed, who continues to do more for me than anyone could expect.  Today the part of my body that isn't functioning is a muscle (I hope) on the right side of my lower back.  I'm not twisting the night away.

My old friend from graduate school, Darrell, and his wife, Joanne, live in the Pacific Northwest and took pity on me, sending a couple of dozen of oysters, which always give me an appetite.  Oysters are best when raw, of course, but given my compromised immune system, that's not a great idea, so we just steam them in some wine and shallots, and when they open, I start eating before Mohamed can keep up. 

Have we ever been so eager (and anxious) to get an election over?  It's partly that every time we think we have some breathing room, something new is divulged about Hillary.  And it's also because there's been not a moment of pleasure in the course of the campaign.  In Kansas, there is very little television advertising, since the Republicans are pretty much shoo-ins for most offices.  The really scary advertising concerns the Kansas Supreme Court, which has been the bête noir of Governor Brownback, especially concerning his constant attempts to cut the budget for education.  Most of the justices, left over from the Democrat Kathleen Sebelius and moderate Republican Bill Graves, refuse to cooperate with Brownback's shameful cuts.  Now there is a much-played ad implying, falsely, that the five justices who are up for retention have taken the side of murderers and rapists in overturning their convictions.  The Supreme Court is the last line of defense against Brownback's power grab and it would be a disaster if these five are turned out of office.

9/29/16

Yesterday was the regularly scheduled, three-month visit to the oncologist, though with some additional twists given recent developments.

There was a the blood draw, the consultation, and the three-month, very expensive bone-strengthening shot (Xgeva, a stronger version of Prolia, the drug that Blythe Danner advertises).  By the time we went to the appointment, my left side was in so much pain that I could barely walk.  I used my walker, but it's oversized, since it had to accommodate the abduction brace when I first got it five years ago, and since I'm not the most graceful or adroit person around, it is forever banging into door frames or getting caught in carpeting, making getting around with the walker probably more hazardous than doing without.

The results of Monday's CT scan were all good.  As far as anything related to my cancer, nothing has changed.  Given the stability, I'll continue with the same chemo and with the same schedule (three weeks on, one week off) of taking it. 

As far as the consequences of the chemo and perhaps of other medications--diarrhea, nausea, lack of appetite--we'll just continue to play around with anti-diarrheal, anti-nausea, and appetite-enhancing meds, hoping that we can eventually find a combination that's tolerable.

But the pains, first in the right leg, then in the right hip, and now in the left buttock, remain unexplained.  By the end of the consultation, after the walking from one end of the cancer center to the other and back again, I was in more pain than I had suffered in a long time.  For the moment, we'll just try to manage the pain, back again on extended release morphine with as-needed Percocet.  Last night, the combination worked fairly well, and though I wasn't pain free, the evening was fairly relaxed.  Now we'll hope that as with the earlier incidences, this pain will eventually diminish.

9/25/16

We had a long, hot summer--or at least so I inferred from the fact that we turned on our a/c on June 1st, and it's still running this morning.  I didn't actually venture out into the heat--a few doctors' appointments, a few lunches or dinners with friends--very often.  It was a hard summer with one thing after another coming up.

There was one set of problems around G-I issues.  The chemo causes almost non-stop diarrhea, and although I take a week off after three weeks on, my body doesn't really seem to know the difference.  It's further confused by the fact that the Percocet is an opioid, which causes constipation.  The two effects don't cancel each other out; they just make regular but unpredictable appearances.  The chemo also raises my blood pressure.  During the three weeks I'm on, I take two meds to reduce hypertension, and they seem to work well.  But during the week that is off, I cut out at least one of those, but then I have days of what seems like severe hypotension.  Meanwhile, whether or not I'll have an appetite is always an open question, as is how much nausea I'll have and how it will manifest itself.  I have all sorts of anti-nausea drugs, but they don't seem to work in any consistent fashion. 

Another set of problems involves physical pain from what seems like completely random places.  As I recounted earlier, several weeks ago I woke up after my morning nap with a right leg that refused to move.  After hoping for the best, we finally spent seven hours in the ER.  I had two MRIs, a CT scan, and x-rays, none of which revealed anything, so seven hours later I went home in just as much pain and immobility as when I went.  That passed...and moved up into my right hip.  We didn't even bother to go to the hospital.  That, too, passed... this time into my left buttock, which has now made my left leg immobile.  Getting in and out of bed, standing or sitting...all are very painful.

And over all of this is a complete lack of energy.  Awake for two or three hours and then my body and brain cease to function.  This happens in the morning, when I fall back into bed around ten.  I stay awake for lunch (if I eat) and my intellectual stimulation for the day, "The Bold and the Beautful."  And then it's back to bed for another 90 minutes.  Usually around 6 p.m. I have another, though shorter, collapse.

Mohamed does even more than before for me.  Otherwise, I'd just sit here in a lump.  He's frustrated as he can't do more, though it's not possible that he's going to create an appetite or calm my stomach.  It's also frustrating to know that things aren't going to get better.  For once, this, too, isn't going to pass.

To add insult to injury:
Seven months ago, we submitted all the information to Customs and Immigration--financial statements, well-written letters of support from friends--and then we've been waiting impatiently for the results.  Mohamed, like everyone else, was given a provisional green card for two years; then he had to apply for "removal of conditions," i.e. making the green card permanent.  It all seemed routine until a letter finally arrived from USCIS, with no green card but with a demand for further evidence.  I have no idea what we can supply that we already didn't.  They thoughtfully included a teeny envelope for our several years of tax returns, credit card info, bank statements, etc.

And then a couple of days later, while I was munching on some granola, a crown snapped off one of my back molars.

Excitement for this week:
Monday (tomorrow) we go for CT scans.
Tuesday it's time for the dentist.
Wednesday we see Dr. Hashmi, the oncologist.

I won't wait so long for the next post, since this week should produce some info.

9/10/16

I've been really delinquent in updating the last post and the results from August's tests.  When KU Med Center used the MyChart electronic feature, they were rather haphazard, slow to post, and when they did so, so detailed and in such medicalese that I rarely could understand much of what they were saying.

Stormont-Vail is very fast to post, consistent in doing so, but concise to the point of equal incomprehensibility.  The results of the August tests on my left should were reported in just a couple of sentences.  There is a 7 cm metastatic lesion on the scapula, but no indication as to whether that was new or just a reference to what had happened five years ago.  The other sentence said that it was impossible to tell whether the humerus is involved.  Again, I don't know whether that's a new observation or an old one.  Dr/ Hashmi didn't seem to be alarmed by any of the results, so we assume that the comments are from the original metathesis in 2010.

The arm has been feeling better.  The leg and hip still don't function completely smoothly, but are better.  Since the last post, however, most of the problems have had to do with the G-I track.   Some days the thought or sight of food nauseates me; sometimes my appetite is good.  Last week was the third week on chemo, and the third week is always hard with nearly constant diarrhea.  At some point, my body is telling me, we'll need to reduce the dosage of the chemo again: we've gone from 800mg/day to 600 to 400 to 400 three weeks out of four.  Although reducing the dosage seems the logical next step, there is the accompanying worry about how much it can be lowered before it loses efficacy.

Meanwhile, this week, not taking the Votrient, means that my blood pressure is hard to regular, often falling to alarmingly low levels.  We went to the S-V Cancer Center yesterday to talk with Dr. Hashmi's nurse (Friday Dr. Hashmi is at KU Med).  We'll adjust the blood pressure medication, but actually, I go back on the chemo on Sunday, so there really isn't much time to judge any results.

So that's the health news for the lasr month.

to the cancer center and back again

Wednesday we had an extra appointment with Dr. Hashmi just to check how I was progressing with
G-I issues.  With a new, more aggressive approach to nausea, that problem has almost entirely disappeared.  And my appetite has also returned, so just put food in front of me, and it's likely to disappear.  After over five years on Votrient, by the third week of each schedule, diarrhea is likely to have returned as a problem.  On the other hand, since I'm taking an opioid for pain, I also can suffer from constipation, leading to a strange (im)balance of the routine and the meds needed to deal with it.  All seemed to be on schedule at this visit, so we decided to scale back gradually and see if the progress can continue with fewer meds.

In October it will be six years that I've lived with stage four kidney cancer.  Given the unexpected extra five years beyond the normal prognosis, the fact that I can take the chemo orally, and the presence of Mohamed in my life, I know that I am very lucky and should have nothing to complain about.  Still, there is much diminished about our lives, especially the inability to travel, which was always a big part of my life. And then there is the fact that sometimes it feels like there's just one damned thing after (or on top of) another.  We felt good leaving the oncologist's office.  But by Thursday night, my left scapula (the first place on my body that I became aware of the cancer all those years ago) caused great pain every time I moved or twisted or coughed.  Sleeping was impossible at first, but after an extra Percocet, I finally did fall asleep.

So yesterday it was back to the cancer center.  Dr. Hashmi is at KU Med on Fridays, so we saw his nurse, whom we like a lot.  One possibility is a fracture of some sort of the scapula, perhaps still weakened from the radiation five years ago.  I got squeezed in just before closing time for four x-rays of my left scapula and shoulder.  I'm waiting for results, and I'll update the blog as soon as they come in.  Or perhaps we'll need to do further CT scans to see whether new tumors have developed.  That scenario would probably lead to more rounds of radiation.  One damned thing after another...

7/2/2016

There's really nothing major to report, but perhaps an update is in order before the next appointment with Dr. Hashmi on August 10.

After 2 MRIs, a CT scan, and x-rays, nothing anomalous showed up with the hip and femur.  That's a relief in that nothing has deteriorated in the five plus years since the surgery and implant.  The lack of results, of course, doesn't explain why my leg seized up so painfully, but it's much better now with generally good mobility.

My appetite is much improved.  We're going to continue with a rather aggressive regiment of appetite-enhancers and anti-nausea medicine until the 10th and then decide whether we can cut back while preserving the gains. 

There was a slight setback over the weekend when I developed a sore throat and cough that interfered with sleeping through the night.  Since I already have frequent fatigue and crash at least twice a day, further exhaustion wasn't exactly welcome.  After some OTC treatments, my throat and cough feel better this morning. 

And so that's how it's been going during this very hot Kansas summer.  Donald has, of course, provided a lot of fear and loathing. 

MRI update

Yesterday Dr. Hashmi's nurse called with the results of Friday's MRI.  Everything appeared to be normal with no problems having developed over the past five plus years since the hip/femur replacement.  That's obviously good news.  It does mean that we don't know what's causing the pain or what caused the immobility of the right leg.  Perhaps I'll start some physical therapy to increase the flexibility.  Or perhaps I'll just think of starting some physical therapy and investigate mind-body connection without bodily involvement. 

and now for something completely different

A campaign oddity that suddenly came to mind as I woke up this morning:  Remember earlier in the campaign when Donald Trump would suddenly stop his ranting to say that he had a meaningful poem he needed to read?  He'd unfold his sheaf of papers and very unpoetically plod through something called "The Snake."  What he thought it meant (Never trust anyone not named Trump?) he never said.  Once the poem was read, he'd go on to other things.  Still, whether Christian or Freudian or just curious, one might find the meaning of a poem called "The Snake" probably fraught, vexed, and imbricated.

I danced many times to Johnny Rivers singing "The Snake" and perhaps, Donald, its meaning may be clarified.  For your enjoyment: 

 https://www.youtube.com/watch?v=bAjo3xwr9sk

le seize juillet

I was going to blog on le quatorze juillet (the French do not call their national day Bastille Day), celebrating the 227th anniversary of la belle France and the 71st anniversary of yours truly, plus discussing the results of that day's consultation with Dr. Hashmi.  But the massacre in Nice hadn't been in the plans.

We met with Dr. Hashmi on Thursday morning.  The last visit, a couple of weeks earlier, had been quite long; for the first time, this one felt rushed.  Much had improved since the last time.  Staying on a regular anti-nausea regimen had made a huge difference, and, with the unforeseen exception of yesterday morning, nausea had almost completely disappeared.  So, too, with a regular schedule of taking appetite-inducing syrup (ugh!), my appetite has improved enormously.  We also discovered that the supposed 17-pound weight loss of the previous visit was the result of a faulty scale.  While I had lost some weight, it was nowhere near that amount--not had I put it all back on in two weeks as the scale indicated on Thursday.  That was a relief, though perhaps they should recalibrate the scale.  So in terms of G-I problems, life is much improved from two weeks ago.  To prove it, my long-time friend and colleague, Virginia, continued the nearly 40 year tradition of taking me out for a birthday dinner, and I ate calamari, a salad, saumon poché, mashed potatoes, and a Napoleon. 

My right leg is much more flexible than it was a month ago, but is still painful.  We couldn't discuss that with Dr. Hashmi on Thursday because the MRI had been postponed till Friday.  Because of the stent in my heart, I can't use an open-sided MRI.  I'd had four or five MRIs before the one a month ago at the emergency room.  The first ones hadn't bothered me, but the last one made me quite claustrophobic.  I was fully enclosed, it was hot, and it lasted an hour.  I wasn't looking forward to the one yesterday, but the hospital used a different machine, and it was quite easy.  Usually, both MRIs and CT scans are done with and without contrast, but the tech said that the pictures were so clear yesterday that we could skip the contrast.  Now it's a matter of waiting for the results.  On the one hand, I'd like them to discover the cause of the pains and inflexibility in my right leg; on the other, I don't really want them to discover that something is wrong.

Now it's time to get a haircut.  It's been a rather busy week, starting with a bath called the "Furminator" for Kimber.  We got two estimates for replacing part of the driveway, or at least the estimates will be in the mail within a couple of days.  I got a Salvatore Ferragamo braided leather bracelet in "Dutch Blue" as my birthday present to go with the brown one I'd gotten a coupe of years ago.  My birthday present to myself is a new turntable.  The old one had worked perfectly well for forty years, and then a couple of years ago, it gave up the ghosts of 45 and 33  1/3 rpms.  I've got about 400 33s, classic and classic rock.  My sole 45 is a record made by Mel Brooks's son Eddie and his wife Susan, who many years ago used to be my neighbors. 

I'll update the blog as soon as I get the results of the MRI.

Make America Again

Let America Be America Again

Langston Hughes, 1902 - 1967

Let America be America again.
Let it be the dream it used to be.
Let it be the pioneer on the plain
Seeking a home where he himself is free.

(America never was America to me.)

Let America be the dream the dreamers dreamed—
Let it be that great strong land of love
Where never kings connive nor tyrants scheme
That any man be crushed by one above.

(It never was America to me.)

O, let my land be a land where Liberty
Is crowned with no false patriotic wreath,
But opportunity is real, and life is free,
Equality is in the air we breathe.

(There’s never been equality for me,
Nor freedom in this “homeland of the free.”)

Say, who are you that mumbles in the dark? 
And who are you that draws your veil across the stars?

I am the poor white, fooled and pushed apart,
I am the Negro bearing slavery’s scars.
I am the red man driven from the land,
I am the immigrant clutching the hope I seek—
And finding only the same old stupid plan
Of dog eat dog, of mighty crush the weak.

I am the young man, full of strength and hope,
Tangled in that ancient endless chain
Of profit, power, gain, of grab the land!
Of grab the gold! Of grab the ways of satisfying need!
Of work the men! Of take the pay!
Of owning everything for one’s own greed!

I am the farmer, bondsman to the soil.
I am the worker sold to the machine.
I am the Negro, servant to you all.
I am the people, humble, hungry, mean—
Hungry yet today despite the dream.
Beaten yet today—O, Pioneers!
I am the man who never got ahead,
The poorest worker bartered through the years.

Yet I’m the one who dreamt our basic dream
In the Old World while still a serf of kings,
Who dreamt a dream so strong, so brave, so true,
That even yet its mighty daring sings
In every brick and stone, in every furrow turned
That’s made America the land it has become.
O, I’m the man who sailed those early seas
In search of what I meant to be my home—
For I’m the one who left dark Ireland’s shore,
And Poland’s plain, and England’s grassy lea,
And torn from Black Africa’s strand I came
To build a “homeland of the free.”

The free?

Who said the free?  Not me?
Surely not me?  The millions on relief today?
The millions shot down when we strike?
The millions who have nothing for our pay?
For all the dreams we’ve dreamed
And all the songs we’ve sung
And all the hopes we’ve held
And all the flags we’ve hung,
The millions who have nothing for our pay—
Except the dream that’s almost dead today.

O, let America be America again—
The land that never has been yet—
And yet must be—the land where every man is free.
The land that’s mine—the poor man’s, Indian’s, Negro’s, ME—
Who made America,
Whose sweat and blood, whose faith and pain,
Whose hand at the foundry, whose plow in the rain,
Must bring back our mighty dream again.

Sure, call me any ugly name you choose—
The steel of freedom does not stain.
From those who live like leeches on the people’s lives,
We must take back our land again,
America!

O, yes,
I say it plain,
America never was America to me,
And yet I swear this oath—
America will be!

Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain—
All, all the stretch of these great green states—
And make America again!

From The Collected Poems of Langston Hughes, published by Alfred A. Knopf, Inc. Copyright © 1994 the Estate of Langston Hughes. Used with permission.

From The Collected Poems of Langston Hughes, published by Alfred A.

7/1/16

We spent much of yesterday afternoon at the cancer center here in Topeka.  Although we had good experiences at KU Med, I must say, said Ed Grimley, that now that we've been having many more visits and tests, it has been good to have the care that much closer.

Although this was the regularly scheduled three-month visit after CT scans, also on the agenda had been the problems of mobility and pain in my right leg (and now my left shoulder as well).  But since the MRI scan had been postponed because the stent in my heart was incompatible with the open-sided MRI machine, that discussion was postponed.  In the meantime, I'm taking time-released morphine twice a day to control the pain.

Added to the consult were the problems I've been having with diarrhea, nausea, and loss of appetite.  I was worried about the CT scans, as it seemed to me that either there would be news to account for these symptoms, but in that case the news would be bad, or there wouldn't be any news, in which case we'd have to continue juggling all the variables that the disease and the multiple medications involve.  The good news is that the CT scans were all normal; nothing had changed with the primary tumor, and there was no new growth of the tumors on my spine.  The bad news had come earlier in the consult:  that I had lost 17 pounds in the two or three weeks since my last weigh-in.  Especially the last week, even the thought of food nauseated me.  Even when food looks good, after a bite or two, I've been unable to continue--at the best.

One of the possibilities, of course, is that after five years I can no longer tolerate the level of chemo, but we had taken two weeks off and the symptoms had only gotten worse, so for the moment that has fallen to the bottom of the list.  Another is that I have had gall stones for some time, and perhaps they have attached to and inflamed the lining of the gall bladder.  Another is gastric ulcers.  A long shot possibility--luckily--is that the cancer has metastasized to the brain, but there are no symptoms specific to brain cancer.  In tracing the chronology of this, Mohamed brought up that it occurred at the same time I had a persistent cough, which had led to headaches, which had led to my giving up smoking but substituting vaping.  Dr. Hashmi lit up with that one, since he feels that vaping is potentially as bad as smoking and that we have no ideas what chemicals are in the vaping liquid.

Originally, he was going to schedule an appointment with a surgeon specializing in gall bladder surgery, but he decided instead that I'll take two different anti-nausea medications regularly as opposed to as needed.  I'll stay on the morphine until I've had the MRI (July 15th) and another consultation with Dr. Hashmi.  I'll continue to take a combo of two anti-diarrheal meds.  Add to all of these, the chemo, the anti-hypertension meds, and who can remember what else, and my innards are a veritable pharmacopeia. 

After the consultation, I spent the next hour getting a saline IV to help ward off dehydration and exhaustion.  I also got the bone-strengthening shot.  While I was getting the drip, another patient sat down next to me and explained his cancer condition.  And he listened while I explained mine.  And then he said, "How has all this impacted your Christian faith."  I replied--tactfully, I thought--that I'm not a Christian.  This was incomprehensible to him.  He had absolutely no response until I was getting up to leave.  Then he asked me for my name so he could put me on his church's prayer list.  I was tactful once more.