Architectural Emotions in a Mid-Century Mind

Posted on March 3, 2019 by John Swinburn

Yesterday, after an email from Dwell prompted me to view photos of a restored and updated Joseph L. Eichler mid-century modern house in the San Francisco Bay area, I fell in love with the architectural style all over again. That happens every time I see a mid-century modern house, whether in the flesh or in photos. I like the original “bones” of the style, but I absolutely adore the updated, more modern interpretations of the style. Frankly, I’ve not seen any brand-new iterations of mid-century modern that even begin to compete with the original architectural expressions. But, for some reason, I regularly see original work that is improved with the addition of modern additions or modern flourishes. For example, I prefer modern kitchens and modern bathroom fixtures and designs. But attempts by architects and builders to replicate the appeal of original mid-century modern design fall flat, in my estimation.

If I were sufficiently flush with excess cash, I would find, restore, and live in a mid-century modern house. That endeavor almost certainly would require me to relocate out of Hot Springs Village, which as of this morning would not disappoint me too terribly. I am tired of intellectual and cultural provincialism. I prefer broad-minded people, people who are not only open to new ideas and new perspectives but who gravitate toward new ways of looking at the world. Ach. I’ve strayed from my screed.

There are houses in the Village that mimic the mid-century modern style. In fact, if I were sufficiently flush with excess cash, I might buy a few of them and restore them. But I might have to go to war with the Architectural Control Committee over the restorations, inasmuch as it seems to me the committee blindly follows some horribly restrictive parochial rules that seem hell-bent on preserving insipid architectural styles. Ach. Again, I’ve wandered.

I would fit in better, I think, in California. Both my architectural preferences and my political leanings would more closely mirror those of my neighbors there than here. That has been true for most of my adult life. The few years I spent in Chicago and in and around White Plains in Westchester County, New York were aberrations; those were Democratic strongholds. Otherwise, I’ve lived the life of an outlier, a political anomaly. However, I can’t say either Democratic stronghold was flush with mid-century modern housing. Nor, to be honest, can I say they weren’t flush with mid-century modern housing. However, the Chicago area was relatively flush with houses designed by Frank Lloyd Wright, including both his Usonian style homes (he only designed about sixty of them; I don’t know how many can be found around Chicago) and his Prairie Style  houses. Whether others consider Usonian related to mid-century modern I don’t know, but I do. And, for the purposes of this post, that’s all that matters. Well, not ALL that matters, but part of what matters.

Last night, as I was trying to go to sleep, I fantasized about the results of restoring a mid-century modern house in the countryside north of the San Francisco Bay area. I don’t know precisely where the place was located, but it was far enough north that it was rather isolated. The house sat high on a ridge, several hundred feet from a sheer cliff at the edge of the Pacific Ocean. The restoration was finished. The house was beautiful and the view was spectacular. Floor-to-ceiling window-walls stretched all along the west-facing side of the house. Outside the glass, a covered stone deck offered protected outside seating; the cover protected the inside of the house from the sun’s rays until a short time before sunset, when the entire living area was washed in brilliant oranges and reds from the setting sun. There was more to the fantasy, but nothing relevant to architecture and being surrounded by intellectually curious and open-minded people, so I won’t go into it. Well, some of it related to intellectually curious and open-minded people, but addressing them here would only confuse the conversation, so I’ll leave it alone.

Why would I fantasize about such things? I can only conclude that the fantasy suggests I am unhappy with where or who I am. Or both. If that weren’t the case, I would have no reason to engage in such flights of fancy. Oh, by the way, during the entire mental excursion, I saw myself as if I were an observer outside myself. And I was wearing a rather stylish grey and white and silver “speckled” sports jacket. The jacket seemed to glisten in the right light. Actually, it reflected the oranges and reds of the sunset in a way that made me appear to glow as if I were radioactive. I wonder if there’s any meaning in that, given my recent exposure to massive doses of radiation that seems to have cooked the inside of my esophagus? Another curious thing about me; I was wearing very nice casual black slacks that fit much better than any clothes I own now (or ever have). The pants legs, unlike any of my clothes, were slim and tapered. And I was wearing a pair of dark grey shoes made of woven leather. Finally, and this is important, I think, my gut seemed to be flat, as if I had remodeled my body as well as my house. I didn’t look muscular as if I were hiding a six-pack beneath my shirt and sports jacket, but I did appear to be in far better condition than I’ve been in for many years. Back to the original question when I opened this paragraph: I suppose I wish I were different. I wish I had a more attractive body. I wish I could wear more stylish clothes. In other words, I wish I looked like someone else. Or, perhaps, I wish I looked like I think I should look, rather than the way I actually look. But that’s not all. I also wish that look were true in another place. “If wishes were horses, we’d all have wings.” My wife said that once, years ago. We’ve laughed about it for years. She meant to say “If wishes were horses, beggars would ride.” But it came out a bit wrong. A bit.

It’s embarrassing to wish for material things, like a mid-century modern house on a ridge overlooking the Pacific, when so many people around the world would give everything they own for a drink of water or a scrap of food. I try not to “want,” but I just can’t seem to get it out of my system. And when I realize that I’m being horribly selfish, I want nothing more than to share everything I have with people who are less fortunate. But that’s not realistic, either. And decisions about such matters are not mine, alone, to make. Maybe that’s the key. Whether the house on the coast or the decision to give it all away, I want to be the final arbiter. That’s the epitome of selfishness, too. Some people, people who are alone, have that luxury. And it is a luxury. Well, if it’s a luxury, should they share it with the less fortunate? See? It’s absurd. A person could tie himself in knots by trying to make sense out of selfishness and luxury and the self-indulgence of opting not to share his life with someone else. Crazy stuff. Madness.

Ultimately, none of this crap matters, or will matter, if whatever is going on with my body doesn’t resolve itself. If the pain in my esophagus turns out to be one of those “rare” cases that is permanent or the pains in my chest and gut turn out to be other, more serious, maladies that the cancer doctors weren’t even considering and, thus, weren’t looking for, wishes won’t matter. A house overlooking the Pacific Ocean can’t fix terminal disease. Pleasant and intelligent neighbors can’t repair fatal afflictions. Granted, living in a wonderful place in a beautiful setting surrounded by enjoyable people could make the end a bit brighter. 😉 But those things won’t change the outcome. We’re all going to die one day. With that as a given, there’s really no strong argument, then, that we ought not to try to live our lives in attractive and comfortable surroundings, right? Philosophy is so complex and so utterly unable to provide crisp, clear, inarguable answers!

I guess I’ll continue to yearn for a mid-century modern house in a progressive enclave, surrounded by people who actually want to spend time with me and engage me in conversation about things both silly and grave. What’s to stop me?

Posted in Architecture, Emotion, Intellect, Philosophy, Politics | Leave a comment

Skeptic in a Strange Land

Posted on March 2, 2019 by John Swinburn

When hope crawls out of the dark woods, stepping across
the wet ground to the rural highway on the edge of the woods,
a super-duty pick-up truck careens down the quiet country
lane and crushes that wish for tomorrow under its massive tires.

Howls of laughter from the truck’s cab, fueled by Keystone Beer
and stale cigarette smoke, spew malignant noise like rancid honey
into the hazy air, coating the morning dew with nicotine and tar
and poisons only a tobacco company chemist could readily name.

The death of hope, unremarkable to those witless celebrants,
leaves a hole in the sky quickly filled by bigotry and hate.
Meth-powered parenthood supersedes empathy here,
urging children to curb intellect in favor of mindless bravado.

Here and there, pockets of compassion emerge, only to be drowned
like ill-fated puppies in pools of toxic rage and maniacal fanaticism.
Hope can’t survive here in this land of twisted religion and
pistol-worship; not here, in this Petri dish of cerebral squalor.

Yet, in spite of the desperation born of congenital stupidity,
a few brave souls climb out of those noxious pools, determined
to scrub the thick layers of scum from the landscape and wash
the disease from brains chemically-cooked in ugly pathology.

I don’t know where those quixotic crusaders find moral stamina
in the face of wave after fetid wave of brutish rejection.
And I suspect their efforts will forever be pointless and wasted.
But they continue to try and I watch with skeptical admiration.

Posted in Poetry, Writing | Leave a comment

Cancer Journal 29, 2019

Posted on February 28, 2019 by John Swinburn

I should have listened to the assertions that I would feel increasingly bad as my chemo treatments went along. Instead, I hoped I would be the exception to the rule. I’m not. Ever since last Monday, a week and four days ago, I’ve bounced between feeling decent and feeling completely worn out. Today is, I think, the worst yet. I spent almost all day, virtually comatose, in my recliner. Finally, just before 5:00 p.m., I took a shower. That was after I spoke to my “nurse navigator.” I explained how tired I feel and how excruciating my experience was this morning when I woke up and took my morning medications. I honestly thought I might pass out from the pain in my upper chest/esophagus. Fortunately, it subsided quickly, though an uncomfortable level of pain remained most of the day. My oncologist prescribed something (two things, actually), again, to address acid reflux. I’m beginning to wonder whether she has a clue. As was the case the last time she prescribed something, the pharmacy automated phone alert system called shortly thereafter, explaining that the pharmacy was attempting to contact the “prescriber” because something apparently is amiss with the prescription.

Despite feeling approximately like crap, I am a very tiny bit better than I was earlier. But I still feel rotten. And tired. I didn’t sleep well last night and, after a day in the recliner, I doubt I will tonight. Ach!

The nurse navigator recommended that I avoid very hot and very cold foods, spicy foods, foods with texture, and a few others. She suggested I might enjoy chicken broth or beef broth. And I might. I’m getting hungry. I did eat a bowl of ice cream just before my shower, but the cold hurt my esophagus. Ach! Again.

The phone rang about eight times today. Six times scammers were behind the calls. Twice were legitimate “business” calls. No one else. That’s pretty typical. We could both die and go undiscovered for days. It could be weeks. We are, in the true sense of the words, hermits, recluses, loners, isolates, lonely souls.

I am in an especially poor mood this afternoon. I’m angry at the world, but I don’t quite know why. Maybe I’m feeling sorry for myself, but I don’t think that’s it. I’m just feeling surly and unhappy and I don’t feel that I can count on hope on the horizon. I am sure that will pass. It always does.

Well, I just saw five large deer walk past my window. They went up the slope next to my house, crossed the street, and wandered into the woods beyond. That improved my mood by a fraction.

Posted in Cancer, Health | 2 Comments

What Will Happen to the United Methodist Church?

Posted on February 27, 2019 by John Swinburn

When I was a boy, I attended the Methodist Church. Occasionally. I wasn’t a fan and, when at a very early age my parents allowed me to decide whether to continue attending, I opted out. Even then, the theology was simply hard to swallow. The concepts of brotherly love, peace, and related philosophies made good sense to me; I readily accepted them. But literal interpretations of the Bible did not fit within my logical, reasoning brain. I could accept much of the Bible’s content as parable. I could not accept it as “fact.” At any rate, I left and never regretted it for a moment.

The news this week that the United Methodist Church acted to reject a proposed

The church’s motto is: Open Hearts. Open Minds. Open Doors. Obviously, the decision to reaffirm its stodgy, ultra-conservative stance that views LBGTs as “an abomination unto the Lord” rejects that motto out of hand. Instead, I think it suggests a better motto would be “Hard Hearts. Closed Minds. Locked Doors.” The fact that 47 percent of the delegates who voted rejected the closed-minded philosophy is heartening to me, though. For them, the official motto still resonates, I suspect.

I suspect the nearly evenly-divided split is frightening to the church. Almost half the delegates voted for a progressive vision that was not accepted and will not be implemented. Those delegates (and the 60 percent of Methodists in general who are said to support LBGT rights and LBGT inclusion in the ministry) are very likely to leave the denomination. Perhaps a new denomination will be formed. Perhaps those who leave will join other, more progressive, forward-thinking churches (which are….?). Or, perhaps, many of those who leave will have become so disgusted with organized religion that they will opt to avoid churches altogether.

For now, the term Divided Methodist Church seems appropriate for the almost evenly-divided denomination. I don’t have a dog in the fight, so the ultimate resolution isn’t terribly important to me. But I’m sorry that the progressive members who, aside from their theological beliefs that don’t mirror mine, view the world in the same way I do must feel abandoned and rejected. They put their faith in an institution that has, by its actions, rejected the core humanist philosophies they hold dear.

Posted in Religion | 2 Comments

Thinking About Emotions and Things Related to Cancer

Posted on February 27, 2019 by John Swinburn

Suffering most emotions more deeply than others seem to endure tends to drain one’s energy. I say that without knowing, of course, how deeply others experience emotions. I base my assessment on observations and assumptions. I did say “seem.” But from my vantage point, comparing what I feel to what others “seem” to feel, my experience of emotions appears enhanced. Not enhanced as in superior; enhanced as in elevated. That’s true, especially, of the emotions I consider negative. Anger. Fear. Sadness. Shame. Disgust. Indignation.

Simply experiencing those emotions at an elevated level may not be what drains energy. Rather, attempting to conceal them or moderate their display so that their strength more closely mirrors “normal” may sap energy. On the one hand, it’s distasteful that one might feel compelled to reign in the full extent of the expression of his natural emotions. On the other, though, because their intensity is so much greater than “normal,” I fully understand how upsetting their display might be to the average person.

All of this assumes, of course, that my core thesis is correct: that I feel emotions more deeply than most. It’s entirely possible that my emotions are no more intense than others’. It’s possible that others are better able to contain theirs or that my judgment about either my emotions or others’ emotions or both are erroneous.

What does it matter? I mean, does it? Is the relative intensity of my emotions in comparison to others’ of any consequence? Probably not. Except in my own mind. Yet I always feel embarrassed when my emotions visibly bubble to the surface in the form of tears. But wait! What emotion is that? Is it sadness that causes tears to flow when hearing or watching a touching scene in a film? Or is it something else? Hmm. I really don’t know.

Not that it would make a difference to the future direction of the universe, but I’d like to somehow measure my “emotionality” along a variety of dimensions and compare my measurements to others. I wonder if such a measure exists? I’m sure one must exist. Assuming it does, I wonder whether tests of its validity and reliability would convince me of its practical utility. Practical. Another “hmm.” Of what practical value would such a measure be…to me? Would I use it to help restrain my overt-the-top emotions? Would it be a valuable training tool?

This entire train of thought arose from a dream I had last night. I was in another city, sitting at a table on a sidewalk of an alfresco area of a bar. A woman I haven’t seen in many years walked by and I called out to her. I was surprised and excited to see her. The look on her face indicated she did not feel the same. She seemed annoyed that I had called to her. That response upset me so much that my eyes began to tear up. That annoyed her even more. She said “I don’t need this crap!” She spun around and strode away.

It was that dream that made me wonder why I felt so deeply hurt by her snub. It was as if my entire day, perhaps the full week and a month following, had been smothered in a dark cloud so depressing I would find it impossible to escape. Why? I have no idea. But I felt a slam to my emotional well-being that threatened to ruin my sense that my place in the world was all right.

***

I am concerned about my chemo port. It feels different than it did up until a couple of days ago. When I touch the area around the port, I feel sharp edges and odd configurations under my skin. And I feel a very mild, but constant, pain in the area around it. I called yesterday and spoke to a nurse, who suggested it probably was fine. But, she said, if I’m still bothered by in a day or two, I should feel free to call and make an appointment and one of the nurses in the doctor’s office will check it out. I suspect it won’t be any different in a day or two, so I’ll have it checked out. The only thing that she thinks “might” have happened, she said, is that it flipped. Whatever that means. But, if there’s no redness, if I have no fever, if it’s not “oozing,” I shouldn’t worry. Okay. But I’ll still have it checked.

My fatigue, I assume from my third chemo treatment, last week, is far greater than with the first two. I’ve been beat for days. Almost no energy. My wife thinks the chemo is “catching up with me.” And she suggests treatment number four, two weeks hence, will be even more draining. Ugh.

My esophagitis remains, perhaps as bad as ever, though maybe it has improved a tad. Sometimes, when I swallow a sip of water I feel like I’m attempting to down a hot coal. Other times, it’s not bad. But when it’s bad, it’s pretty damn awful. I sure hope my esophagus heals very soon. I want my life to be more normal again. Soon.

Posted in Cancer, Emotion, Health | 3 Comments

Cancer Journal 28, 2019

Posted on February 21, 2019 by John Swinburn

Food has lost its appeal. I’m no longer in love with the textures and flavors of food. Instead, I seek only enough to survive and keep me from feeling hungry. And whatever I swallow has to give me as little pain as possible. Suddenly, the esophageal pain associated with eating has gotten much worse. I’ll give this turn of events another day or two, maybe until early next week, to correct itself before I ask the radiologist to intervene. I suppose it won’t correct itself; in the hope that I can heal myself, I’ll continue to take the medications he prescribed and will avoid foods that exacerbate the pain.

I thought the worst of it had passed and I was on the way to recovery. I guess the last few doses of radiation, though, broiled the lining of my esophagus. I didn’t help matters, I’m sure, by downing some rather spicy New Orleans style foods. Then, last night, I ate pizza. While it tasted good, it hurt. But, regardless of the pain, I finished two pieces. That was idiotic. This morning, drinking a glass of water is something of a struggle, though I’ve been able to down half a glass so far. But the pain in my chest tells me I’m paying for my dietary indiscretions.

Except for the fact that the oncologist’s and radiologist’s medical staff told me I should not lose weight, I’d look at this situation as an opportunity to lose weight. Water, alone, should do THAT trick. But they insist I should consume ample calories. And they gave me plenty of Ensure to do the trick. The label on the drink, though, as well as plenty of information I’ve received and read from other sources, suggests that Ensure and its brethren are, essentially, massive doses of sugar stuffed with vitamins and minerals that the body cannot easily process as essential nutrients. On the other hand, I’m lazy and tired and don’t feel like doing what I should, which is buy fresh ingredients and make my own nutritious shakes.

I’m counting on the prospect that my present state of mind—an aversion to food—will pass when my esophagus heals sufficiently. It may be just a day or two. It could be weeks. The radiologist advised me to continue his prescribed regimen (of aloe vera juice, foul-tasting tar-like goo, and chalky tablet crushed in two teaspoons of water) for at least two to four weeks after I complete my chemotherapy, which would be about five to six weeks from now. At this very moment, that sounds like an eternity.

It’s amazing how quickly one’s moods can change. Just a few days ago, I was almost elated that the process is nearing its end. Well, “almost elated” might be an overstatement; tired and grateful may better describe my mood then.

I haven’t written much about the effects of radiation on my skin. The treatments have caused a large swath of brown skin, covered with freckles, to appear on my back. And my skin is extremely sensitive across my chest, especially the right side, on my right side under my arm, and across my back (including that large swath). But that sensitivity pales in comparison to my esophagus. And I have at least five permanent ink dots on my chest and under my arms, not that I feel them in the least. But I’m tattooed now with those little dots.

I’d sure as hell like to feel compelled to write about something more interesting and more intriguing than my medical condition. I wish my brain weren’t so foggy. I think my level of “chemo-brain” is considerably less than many people experience, but it’s sufficiently present for me to notice it. And I don’t like it. I feel utterly devoid of creativity. I tell everyone I’m doing fine and making progress, but I feel more like I’m sinking into a vat of mind-numbing quicksand. I hope this sense of…whatever it is…dissipates quickly. I can’t imagine dealing with this for long.

A day or two ago I scrolled through quite a few old posts on this blog and was pleased to find a number of them I found creative, insightful, emotionally charged, and/or intellectually strong. Despite my happiness at finding them, though, I was struck by the fact that they are old. Nothing I’ve written lately—in the last year or so at least—fits those descriptions. I wonder if cancer robbed me of my creativity even before I knew I had the disease. Enough of this. It’s time to try to finish my glass of water and, then, force down a 220-calorie to 350-calorie sugar shake from the makers of Ensure. After that, it’s the aloe-vera juice regimen. Blech.

Posted in Cancer, Health | Leave a comment

Cancer Journal 27, 2019

Posted on February 19, 2019 by John Swinburn

Today I will have the final radiation treatment designed to kill whatever cancer cells remained after surgery to remove the lower lobe of my right lung and the tumor housed therein. Radiation treatments caused me quite a bit of fatigue, off and on, but the most onerous side-effect was (and remains) a scorched esophagus. That side-effect made swallowing a painful undertaking. Sometimes it was tolerably painful, sometimes so excruciating that I howled in pain and rejected even wonderful food that, in other circumstances, I would have devoured like a starving wolf. The doctors prescribed a medication routine I’ve described before; it works, sort of, sometimes. The most horrific pains seem to have disappeared, but I’m looking forward to the elimination of all remnants of the side-effects in my seared esophagus.

Yesterday was round three of four for my chemo treatments. The next one will be three weeks hence. It will be “interesting” to learn what side-effects I might experience from yesterday’s treatment (and the one after), especially since they will not be exacerbated by the radiation treatment (at least not for long). It’s possible that the fatigue will come again; radiation may not have been the primary culprit. And it’s still possible that I might lose my hair; the fact that it hasn’t happened thus far is no guarantee of future experience. In fact, I heard from a couple of people within the last few days that their relatives lost their hair after the third chemo treatments. If it happens, it happens. Not much I can do about it, so I shall not worry. If it starts, I’ll head to the barber shop to have my head sheared extremely close.

After feeling pretty good all day, I crashed almost immediately after we got home. Fortunately, some friends stopped by the house while we were out having my treatments yesterday afternoon and left a big container of potato soup and a giant piece of cake. We had soup for dinner last night, capped with cake for dessert. They were both wonderful!  It was especially nice that we didn’t have to do anything more than heat the soup and, voilà, dinner!  Janine had a pretty long, demanding day, so the dinner was just what she needed. She steamed some fresh green beans to go with the soup; it was perfect.

Despite nearing the end of my radiation and chemo treatments, I’m fully aware that there’s still a lot of “doctoring” I have to endure. Today, I’ll get my follow-up appointment scheduled with the radiologist. I have a blood draw scheduled for March 7, just a few days before my final March 11 chemo treatment. And I’m sure I’ll have a follow-up visit soon thereafter with my oncologist. And there will be C.T. scans and P.E.T. scans and blood work and assorted other stuff I’ll have to deal with on a regular basis, interfering with what could otherwise be a calendar full of relaxed, empty schedules. Such is life. I’ll deal with it.

I’m looking forward to recovering my strength and, then, building my stamina. I haven’t felt really like myself since I underwent surgery on November 19. Even though that’s only three months, it feels a bit like three years. God, I hate cancer.

Posted in Cancer, Health | 2 Comments

Too Tired to Care?

Posted on February 16, 2019 by John Swinburn

I read an online article from Maclean’s Magazine (a left-center leaning Canadian news magazine) yesterday that moved me to rage. The article dealt with a decision by a local police department to issue an “Amber Alert” in the middle of the night a few nights ago about a missing Brampton, Ontario girl. As a result of the alert, someone spotted her father’s car, leading to the man’s arrest. But it was too late for the 11-year-old girl; she was found dead.

The next morning, social media was abuzz with complaints about the late-night alert that awakened people. The police department logged 383 calls, mostly complaints, about the alert. People complained, among other things, that they were too far away from the crime to have done anything or that they were awakened even though their phones had been put on “do not disturb.” One man complained that “We do not work for [the police].” The complainers were angry about their interrupted sleep.  They were upset that they were being asked to contribute to work that they believed the police should do, with no public involvement. The article’s writer, Scott Gilmore, was rightfully indignant. Here’s some of what he wrote in response to the complaints made about the alert.

This is a comfortable land. Our cars have heated seats. Our winter coats have Bluetooth. Our hot dinners come right to our door. Life expectancy is higher than it has ever been, and crime is lower than we ever could have hoped.

How did this happen? Mostly because we as a society figured out how to move forward together. Collectively, we agreed to a mostly unspoken social compact: if we look after each other, we will all be looked after. There’s nothing particularly unique about this; it’s a variation of the “Golden Rule” which has been the bedrock of every civilization since Ur.

But we have grown so entitled to our comforts, we’ve forgotten that we have to pay for them, that we bear collective responsibilities. We can’t be bothered to vote. We resent paying taxes for public goods. We volunteer in our community less and less. And now we even begrudge having to help save the life of a child.

That is what citizens are complaining about today. They were asked to help save a child and this irritated them. In small towns, when a child goes missing everyone knocks on doors and wakes each other up and searches all night. Because in a community people look out for each other, they understand the duty we owe our neighbours. They recognize that if you want to live in a town that protects its children, occasionally you have to get up, go outside, and help.

In my opinion, the indignation expressed by the people who complained about the late-night alert is a symptom of a social illness that, if left untreated, will destroy decent society. If people are permitted to behave in such self-centered ways without being called to account for it, we will slip into the gutters, never to climb out. I am grateful that Scott Gilmore used his media platform to lambaste those who complained. I learned, from another Maclean’s article, that the Amber Alert was only the second ever to be sent to Ontario cellphones since the system was implemented last April. But the fact that it awoke people on a work night was an outrage.

Gilmore’s comment is extremely important: “in a community people look out for each other, they understand the duty we owe our neighbours.” That is the bedrock of society. that is what we are about. Without that compassion and caring for one another, we are doomed. Yet people seemed to be too tired to care that a child was missing. A child who later was found dead. I’m still angry about what I read.

For as long as the links are valid, here are the ones from which I learned of this event: first and second.

Posted in Anger, Compassion | 5 Comments

Cancer Journal 26, 2019

Posted on February 15, 2019 by John Swinburn

Yesterday, during my visit with my oncologist, I learned that the inquiry from Caris Molecular Intelligence a few weeks ago wasn’t entirely about “future treatments” if cancer were to recur. The genetic tests revealed that I have a “60% positive PD-L1,” which “might” suggest that I “might” be a candidate for an immunotherapy that could possibly help prevent a recurrence of my cancer. The immunotherapy would involve intravenous injection, every two weeks for a year, of a drug called Imfinzi (a brand name for durvalumab). There’s no assurance my insurance company would pay for it, the doctor says, because I don’t quite fit the profile of people for whom the drug is recommended: that is, people who cannot be treated for lung cancer with surgery. But, she said in effect, “it seems like the drug works for people who are otherwise like you, so it makes sense to try it.”

Once I got home, I did some research. PD-L1 is shorthand for Programmed death-ligand 1, not a particularly cheery name for a protein for which I am 60% positive. I’ll admit, the descriptions of the protein, as well as its functions, are more complex than I was willing to attempt to understand. But the mere fact that I might be a guinea pig outside the scope of a formal study was a bit off-putting.  Oh, and there are potential side-effects to treatment with the drug aimed at addressing PD-L1:

  • Lung problems (pneumonitis)
  • Liver problems (hepatitis)
  • Intestinal problems (colitis)
  • Hormone gland problems (especially the thyroid, adrenals, pituitary, and pancreas)
  • Kidney problems, including nephritis and kidney failure
  • Skin problems
  • Problems in other organs
  • Severe infections

The PD-L1 protein disguises cancer cells from the immune system. According to the AstraZeneca Infimzi marketing site, the drug binds to and blocks the PD-L1 protein, thereby allowing the immune system to “see” and attack cancer cells. And, the site mentions, “There is a chance that IMFINZI may affect healthy cells, too.” Yeah. The side-effects.

Before I learned more details about the immunotherapy than the oncologist shared, I said I’d consider it if the insurance company would pay for it. Now that I know a bit more, I think I’ll pass. I’ll take my chances than my PD-L1 proteins might disguise future cancer cells from my immune system. I’m not beyond changing my mind, but for the moment, I think I’d rather minimize the chances of the kinds of side-effects this treatment might bring.

Just three more radiation treatments and two more chemo treatments. As of next Tuesday, I’ll only have one more treatment left: my final chemo. I am looking forward to the end of this process.

 

 

Posted in Cancer, Health | 2 Comments

The Break, Season 2

Posted on February 13, 2019 by John Swinburn

Last night, I watched season 2, episode 1 (and part of 2 before I dozed…not because it wasn’t interesting, but because I was absolutely worn out) of The Break (La Trêve, in French, “The Truce”), a Belgian crime drama. I absolutely loved season 1 and I expect I’ll find season 2 equally as compelling. It is, in parts, gruesome, bloody, and stark, unlike whitewashed dramas on American television (except American television is addicted to gunfire exploding in fountains of blood). But those elements are not gratuitous; they contribute heavily to the story and the settings. Now that Netflix seems to be working properly (crossing all ten toes and most of my fingers), I can watch stuff besides HGTV re-runs, which makes TV viewing much, much more enjoyable. Perhaps I could find other enjoyable stuff, but my efforts on regular cable have failed miserably. At any rate, the series focuses on Police detective Yoann Peeters, who has moved from Brussels to his small hometown (in the first season). The quiet little place experiences a horrible homicide (an EXTREMELY unusual event) almost immediately upon his arrival. The first season followed his investigation of the homicide, all the while addressing his own psychological challenges (among other side-stories). The second season opens with another horrific homicide, almost immediately pinned on an emotionally and intellectually challenged young man who has just been released from prison for an earlier homicide (which he probably didn’t commit). I’ll leave it at that. Superb series! I highly recommend it (so far).

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Cancer Journal 25, 2019

Posted on February 12, 2019 by John Swinburn

Nothing much new, except that painful swallowing continues. It’s possible, of course, that it could be far worse without the extremely inconvenient medication regimen after every meal. One of the medications, nystatin suspension, apparently is in short supply for some reason. I tried to get the prescription refilled yesterday, only to find that no nearby pharmacy has it. Finally, after some gnashing of teeth, a compounding pharmacy outside the west gate got my radiologist to agree to a replacement, clotrimazole. I haven’t taken the new stuff yet, but I know it’s different from the nystatin. For one thing, it smells like grape jelly, one of my least favorite odors on the planet. For another, it must be refrigerated.

If my calculations are correct, including today, I have only six more radiation treatments left. It’s my understanding that my painful swallowing may last three or four weeks after treatment ends. Or, according to what I’ve read of long-term side-effects, the pain could continue forever. I hope that’s not the case. I sincerely do.

My next chemo treatment is next Monday. The final chemo treatment will follow three weeks hence. There’s light at the end of the tunnel.

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Unbearable Mistakes

Posted on February 11, 2019 by John Swinburn

A quote attributed to North Carolina Republican Congressman Walter Jones, who died yesterday, saddens and moves me.

“I did not do what I should have done to read and find out whether Bush was telling us the truth about Saddam being responsible for 9/11 and having weapons of mass destruction. Because I did not do my job then, I helped kill 4,000 Americans, and I will go to my grave regretting that.”

Later, he told a reporter:

“I have signed over 12,000 letters to families and extended families who’ve lost loved ones in the Iraq and Afghanistan wars, and that was for me asking God to forgive me for my mistake.”

Some mistakes can never be undone. Their effects can be so horrific that it is almost impossible to fathom how a person who makes them can live with himself. But people make such mistakes all the time. People commit murder in unchecked rages and, almost instantly, regret their actions. They want nothing in the world more than to undo what they have done, but it’s impossible. Regardless of their regret, though, our society demands some form of retribution. We demand extended prison time or, in many cases, a death sentence. Because, we argue, no matter how remorseful a person may be, the act of killing another human being is so horrible that only the most monstrous penalties are appropriate.

How is it that we cannot forgive a person who commits a single instance of murder yet we can forgive someone like  Congressman Jones, who admits to contributing to the deaths of thousands? Obviously, Congressman Jones did not intentionally kill those thousands, but his actions helped contribute to their deaths. How do we differentiate him from others? How do we permit ourselves to pity him and understand his regret, while maintaining our condemnation of the person who, in a blind rage, took someone’s life?

Lest it be unclear, I’m not arguing that we should offer blanket forgiveness and pity for murderers. I’m only asking myself how we justify, intellectually and emotionally, treating responsibility for the deaths of thousands differently than we treat responsibility for the deaths of individuals? How can I feel sympathy and empathy for Congressman Jones’ sense of regret and remorse, while allowing myself to feel no such emotional bond with the woman who, in a fit of rage, shot her unfaithful husband? Or have I simply conditioned myself to abandon my empathy and sympathy for the murderous woman because society has told me it’s the right thing to do?

I think the fact that people express deep remorse for their unforgivable acts is one of the reasons I long ago decided that I’m not only not in favor of, but actively oppose, the death penalty. That, coupled with the very real possibility of unjust convictions of innocent people, changed my mind. I still feel rage and anger and a desire for revenge against people who commit heinous crimes, but I temper those wishes with the knowledge that questions of guilt or innocence and real regret always are at play. My compassion for those judged guilty doesn’t compare to my sense of compassion for victims and their families, but it is sufficient to make me err on the sides of uncertainty and remorse.

Though I know very little about Congressman Jones (other than the fact that he switched parties from Democrat to Republican , that he regretted his votes in favor of the Iraq invasion, and that he was among those in Congress who pushed to rename french fries to “freedom fries” after the French opposed the 2003 U.S. action against Iraq), I feel empathy for the man. I hope he was able to finally believe, before he died, that he was forgiven.

 

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Film Nibbles

Posted on February 8, 2019 by John Swinburn

I watched The Angel the other night, the true story of Ashraf Marwan, who was President Nasser’s son-in-law. He was also a special adviser to Nasser’s successor, Anwar Sadat, at the same time he served as an asset to Israeli Intelligence. I found the film fascinating (though motivations were a bit confusing from time to time), up until near the end. Somehow, it sort of fell apart late in the game, but I’m glad I watched it nonetheless and I’d recommend it. The film is based on the New York Times bestselling book, The Angel: The Egyptian Spy Who Saved Israel, by Uri Bar-Joseph. The actor who briefly played Muammar Gaddafi, Tsahi Halevi, was a very visible cast member of Fauda, which I just finished watching a few days ago.

Speaking of Fauda, I found both seasons  absolutely riveting. I sort of wish I’d gone back to watch season 1 again before starting season 2, as I was confused for a while, but not irretrievably so. I can’t say enough about how well the subtitles were done; I simply forgot I wasn’t watching it in English.

Speaking of foreign television series, season 2 of The Break will be available on Netflix on February 9. Season 1 of this Belgian TV series was fantastic. I can hardly wait to see season 2.

 

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Cancer Journal 24, 2019

Posted on February 7, 2019 by John Swinburn

My radiologist resumed my radiation treatments today. I didn’t expect that he would in light of the fact that the pain I feel when I swallow hasn’t receded at all. He said “I hope the pain goes away after we complete all the treatments.” Yeah, me, too.

I lost a meager 4 pounds since last week, which was 4 pounds more than they wanted me to lose. I would have preferred losing 24 pounds, but that’s probably really pushing it in a week. I just finished eating several cookies and a couple of pastries, which probably will put my weight loss in the negative column for next week. That, plus the ice cream and macaroni & cheese that’s easier to eat than most other stuff.

Pain seems to be on the increase in my gut and on my skin. I’ll have to explore than with a doctor next time I see one. I’m surprised the next blood draw won’t be until a week from today. That will make it thirteen days between blood draws. I think they forgot one, but even after inquiring of the nurse, I was assured that, no, the schedule was intended. Except their original schedule, which remains on my portal, disputes that. Even after I pointed that out, the “nurse navigator” insisted the original schedule was highly tentative. Hmmm.

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Mental Sprawl

Posted on February 7, 2019 by John Swinburn

According to a news story I read a day or two ago, scientists or physicians or some other academically qualified researchers have determined that anger can be a symptom of depression. As I recall, the piece suggested that people who easily erupt in anger may be depressed. That seems to be the case especially when displays of anger burst forth against those close to them. And, it seem, it may be true for those who have a “hair trigger” that causes them to explode, then quickly recover. Reading the article made me wonder whether my life-long tendency toward spontaneous, but short-lived, gusts of anger may be symptomatic of depression, rather than an emotional system that never developed beyond the juvenile stage. I’ve long suspected, for a variety of reasons, that I may suffer from a fairly mild form of depression. But I’ve never shared that suspicion with anyone; certainly not with a medical professional who might be able to determine whether my suspicion is well-founded and who might be able to help address it, if it is. As much as I’ve always thought myself more intelligent than to stigmatize mental illness, I’m not so advanced when it comes to considering that it might affect me. Maybe I’ll overcome that embarrassing character flaw and actually look into it. Next month, I have an appointment with my primary care doctor. If I can muster my courage, I’ll explore it with him. The brief visit with him could become more involved than either of us planned, if I actually pursue all my questions with him.

Of course, I may be suffering from nothing more than hypochondria. But, then again, if I were to learn that a prescription anti-depressant can reduce or eliminate my propensity to erupt in unjustified anger at the slightest provocation, I may get even more depressed for having waited forty-five years to investigate possible solutions. But that’s not true. I have investigated solutions. I’ve read books on anger management. I’ve tried meditation. I’ve done all sorts of things that can, ostensibly, address anger. Zip. Although, I think I’ve improved dramatically since I retired.

I was never suited for a career so utterly imbued with stress as the one into which I fell. I would have been far better off as an academic or an electrician or an organ-grinder. Those careers, I suspect, have their own unique stresses. I can’t undo what I did for a living and I shouldn’t regret the years I spent doing it. Shouldn’t. It had plenty of upsides. World travel. Lots of discretion over my time (but lots of absurd demands on it, as well). There must have been more. I look back on it, though, and have absolutely no regret that I got out early. Early retirement was, I think, one of the best decisions I’ve made. I’ve been able to spend eight years, up until the very recent past, carefree and relatively healthy, enjoying my free time. Good call, John. Actually, I can’t claim full credit. My wife had a lot to do with it. A lot.

Back to the issue at hand, though. In spite of the potential that I might be forced to kick myself repeatedly for having failed to act earlier, I would be absolutely delighted to learn that my life (but, more importantly, the lives of people with whom I interact) might improve immeasurably if I were to regularly take a simple pill (though I have no idea what pill that might be). And, again, it’s not just the matter of anger. It’s the sadness, the pessimistic sense that there’s no point in trying to change the world, the feeling that my life ultimately just doesn’t matter. Maybe those things contribute to my susceptibility to certain music causing a flood of tears to flow. Or maybe that’s natural, but most men have succeeded in learning to control the spigot.  I would just like to feel generally happy. I do, I suppose, most of the time. But there’s always this underlying sense that it’s temporary, that happiness is an artificial condition we strive to achieve but one that can never envelope us completely for long.

***

I’ve written so little fiction lately that I wonder whether I’ve truly lost interest in it. I haven’t had any real impetus to write fiction for months. Oh, I’ve written a little, but it has been weak and uninspired and generally substandard fare. Maybe fiction isn’t the escape it once was, though I don’t know how to quantify just how much of an escape it was before versus now.  I am not going to berate myself (much) for steering clear of fiction. I have other, more pressing, things on my mind. Like cancer and the potentially long-term side-effects of its treatment.

***

I hear the wind outside my window. It’s fierce. In the pre-dawn darkness that’s just now giving way to dull grey light, I can see the trees sway and bend. Though I haven’t seen them fall, I know the ground beneath the trees is littered with dead branches that weren’t there last night. Occasionally, the noise of the wind changes from a roar to a high-pitched howl. Suddenly, the cacophony morphs into an eerie silence, as if the wind senses that it’s being heard and watched and, in response, it reciprocates by watching and listening. Today’s weather will change drastically as the morning goes by. Forecasts call for a 50 degree drop in temperatures by early tomorrow. The temperature now is 72 degrees. By 11:00 a.m., we’ll see it drop to 50 or below. Steady 10 to 15 mile per hour winds from the west-northwest and northwest will bring colder air with them, so that we experience freezing temperatures by bedtime. In the morning, I can expect to awake to an outdoor temperature of about 22 degrees. Ach. I prefer warmer climes.

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Cancer Mythology

Posted on February 4, 2019 by John Swinburn

I’ve slept more in the past week, I think, than I usually sleep in the course of a month. That may be an exaggeration, but not much. I am in bed by 8 or 9 in the evening, up around 4 or 5, and sleeping in my chair before sunrise. It’s now almost 11:30 in the morning and I’ve just now awakened again. I  haven’t been asleep every minute since sunrise. But most of them. I was awake long enough to drink bottle of Ensure and take my medications. But just barely. I loathe this sense of absolute weariness. It’s as if I am wearing out like a pair of ancient shoes, their leather so thin that a slight motion in the wrong direction will rip the leather into shreds so delicate that nails can’t bind them to the soles. I feel so tired that I must have been forced to stay awake for a month but I know that’s not true. I should feel utterly rested after all the sleep I’ve had. But I don’t.

The pain in my chest, caused by my burned esophagus, doesn’t seem to be getting any better. Instead, it seems to be spreading and going deeper, like my heart is in the grip of a vice that squeezes with each move I make. I spoke to my doctor’s nurse a while ago. She advised me to continue taking the drugs intended to address the pain and to come in half an hour early on Thursday, before the scheduled radiation treatment, for an assessment. Perhaps the pain will have disappeared, or become more tolerable, by then. Perhaps all will be well.

I am not comfortable with pain. I’ve always said I have an allergy to it; half joking, half serious. Some people can tolerate pain; some can’t. I can tolerate it, but only during the course of complaining bitterly about it and behaving as if the pain is attempting to kill me. I suppose I dramatize pain. But  try not to. I try to cope with it and accept that it is what it is. That rarely works. I whimper, silently or not so silently, wishing and hoping the pain will take pity on me and will leave me alone. It rarely does. I can’t imagine how I would react to excruciating pain. I might tear my eyes from their sockets in an effort to distract myself from the agony. I realize that sort of behavior flies in the face of reason, but I am nothing if not reasonable. See, the pain drives me to distraction. I try to laugh but cough convulsively instead.

Today is, as best as I can tell, a gorgeous day. Blue skies, painted with a few white clouds, invite people outside to enjoy the warm weather. The temperature has reached almost 70 degrees. It’s the sort of day that healthy people rush outdoors to enjoy. But I remain indoors, warming myself in a t-shirt and sweatshirt because I feel a little too cold. I wish I were outdoors, sitting in the sun, enjoying the heat and the fresh air. But I’m not. I’m inside, shivering on occasion and angry at the universe for treating me the way it’s treating me today. Bastard!

My sense of humor is attempting to break out of the hard, cast-iron shell wrapped around my body, but it’s having a hard time of it. Why is that, I wonder? Could it be that my sense of humor is reacting badly to the multiple wounds on my chest and back and side? Could it be that laughter is cursing loudly, pointing at evidence of drunken scalpels behaving badly after a night directed to do bad things by wayward anesthesia drugs?

I think I need to go back to sleep. But I’d like to eat, instead. I miss foods that I dare not eat for fear of making my esophageal pain worse: jalapeños, Tabasco sauce, salt, and lemon juice. Instead, I am relegated to drinking 350-calorie food-substitutes, slurries that ostensibly will keep me from losing weight. They (to doctors and nurses who occasionally look out after me) want me to drink six of them per day. There is no way in hell I’m going to drink six bottles of Ensure in a single day. I might go for three. And, if I do, I will agree to cap them off with a half gallon of orange sherbet every couple of days. They want calories, I’ll give them calories.

I’d like to have a shower servant today, someone to gently scrub my skin, just hard enough to remove the remnants of the lotion I’m required to use to battle the “sun burn” I’m getting from the radiation treatments. After my cleansing, I’d like my shower servant to give me a pedicure and, once I’m clean and dry, to rub healing lotion on my back and chest. Then, a wash of healing skin-cream all over my arms and legs would be nice to help ward off the dryness that seems to be getting more and more pronounced. After I’m dressed in a soft robe, a nice glass of red wine would be nice. I am, begrudgingly, permitted one glass of wine per week. Yesterday would have been one week since my last very small glass of wine. My wife won out, though, by telling me I should wait for wine until some unspecified time in the future.  Yes, I should wait until I’m older, that’s it. I don’t believe for a moment that a glass of wine each and every night would be problematic for me. I think the doctors demand wine be eliminated only because they can get away with it. Perhaps they are in favor of prohibition. Or, worse yet, they secretly admire Donald Trump and his lifestyle. If that, they deserve to be impaled on a spike in his bollard wall. I wonder whether my contemplation of wine is making me into an aggressive drunk? That would be an interesting research project, wouldn’t it? “An Investigation into the Physiological Changes Wrought on the Nervous System by Contemplating the Consumption of Alcohol.” The Blue Laws would have to be revised to prohibit even thinking about buying alcohol on Sundays.

I guess I’ve successfully stayed awake for most, if not all, of the time required to write this incoherent screed. I’ll assume the content of what I’ve written can be attributed to some odd form of cancer mythology. Another possible thesis for one of my many master’s degrees.

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Cancer Journal 23, 2019

Posted on February 3, 2019 by John Swinburn

It’s Sunday morning. I slept/dozed most of the day yesterday, waking occasionally long enough to eat a bit or listen to the radio. Janine drove in to Benton to do some shopping while I rested. Rested isn’t the right word; I collapsed, that’s what I did. Even though I dozed most of the day, I still wasn’t able to stay awake long after she got home. We had an early dinner, after which I went through my post-meal medication routine and then took a shower and went to bed. I awoke before 2:00 a.m., feeling like I’d slept far too long; my bones ached the way they do after spending far too long in bed (though much of my day wasn’t in bed but, instead, in a recliner). But, I tried to sleep anyway. I finally got up around 4:30.

I attribute yesterday’s monstrous dose of fatigue to Monday’s chemo; I don’t know what else to blame. I hope one day will do it. We have dinner plans tonight with neighbors, so I really don’t want to deal with another day of fatigue and painful swallowing again. I didn’t experience too much pain with swallowing yesterday, at least not all day long. But late in the day the pain was back with a vengeance. I’m tempted to try my medication routine without eating first, but I’m not sure whether that would be a wise move, so I guess I’ll try to follow the instructions. Damn. Damn. Damn.

I wonder whether the chemo and radiation are doing more harm than good? Some of the side-effects of the two treatments can be permanent, according to the literature. Permanent side-effects are “rare,” but not unheard of. I considered, seriously, not having any treatment other than surgery. That might have been the best option. Surgery was bad enough, but I think its effects have been exacerbated by five-days-a-week radiation treatment and the injection of cell-killing drugs into my bloodstream.  I have a fear that I’ll find myself so badly incapacitated by my treatments that I’ll be unable to act for myself. Being locked in a body that won’t function the way it was intended is a terrifying thought. I’m not Stephen Hawking; I am not suited to living only through my brain.

Until just now, it hadn’t occurred to me that the temporary pause in my radiation treatments has given me an opportunity I haven’t had for several weeks. I could take a day-trip (or two) during the week. I am not restricted by visits to the doctor’s office until Thursday. If I can persuade Janine, I might get out of town for a day or two. That would be a welcome respite from being tied down to the house and my surroundings. The key, of course, is whether my fatigue and trouble swallowing will just cooperate by remaining at bay for a short while. I’ll explore that tomorrow. Maybe. If I can cope with rain showers and daytime high temperatures around 70, I should be fine. And I think I should be fine.

 

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Cancer Journal 22, 2019

Posted on February 1, 2019 by John Swinburn

Apparently I misunderstood my doctor yesterday. He said, but I did not hear, that he wanted to postpone further radiation treatments until next Thursday. I went in for my treatment this morning and the radiation tech informed me that the doctor had delayed further treatments until a week from yesterday, thanks to my seared esophagus. So, I felt like a cretin, but actually was pleased. Even though this will delay completion of my radiation treatments by a week, I think I will be happier to know that my esophagus is healing. I’m continuing the medications he prescribed a week ago and I expect I’ll be fine a week from now. So goes cancer treatments.

With this delay, I have no treatments, no blood draws, NOTHING, until next Thursday. I may just relax and vegetate for the next several days. I felt absolutely drained this afternoon, so much so that I opted to let Janine go shopping, fill up the car with gas, and get the mail while I sat and relaxed in the car. And when we got home, I went to sleep in my recliner. I guess it’s either the radiation or the chemo or both, perhaps combined with stress of some sort caused by the whole cancer treatment process. I feel very much like I could sleep for two days right about now, but I won’t. I’ve made commitments. Though I realize I could, in a pinch, break them.

 

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Cancer Journal 21, 2019

Posted on February 1, 2019 by John Swinburn

The radiologist told me to keep following his drug regimen and to drink six bottles of Ensure a day. And to come back next Thursday and tell him whether the pain I experience while swallowing improves. Hmm. I was hoping for something a little more interventional and more likely to relieve the pain. But there you go.

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Cancer Journal 20, 2019

Posted on January 31, 2019 by John Swinburn

A week ago, I began experiencing pain when I swallow, thanks to (I assume) the effects of the radiation treatments on my esophagus. The radiologist prescribed some drugs that I take in succession following each meal: first an ounce of aloe vera juice, followed twenty minutes later by a teaspoon of Nystatin, followed twenty minutes later by a carafate tablet dissolved in 10 cc of water, followed by nothing by mouth for twenty minutes. I noticed no noticeable change until day before yesterday, when the pain got worse. Yesterday, it was much worse. I couldn’t finish lunch because of the pain, opting to choke down a bottle of Ensure, instead. Ditto for dinner. The pain is present event without swallowing; it burns in my chest, the level of pain changing depending on my position. Last night, I didn’t sleep especially well because the pain kept awakening me and/or keeping me awake.  As I type this, I’m taking a painful swallow of strawberry-flavored Ensure at a time for breakfast. No coffee, as the hot liquid hurts like the devil going down. Even the cold Ensure hurts with every swallow. Fortunately, today is the day for my weekly visit with the radiologist, so I hope he can offer options. Even swallowing water is hard and painful. This cannot go on for long or I’ll get dehydrated and starve. Thanks to my years of packing on excess weight, it will take far longer to starve than to become dehydrated.

Yesterday was my first phone call with the nurse navigator who was assigned to me to help me deal with cancer treatments. Despite the fact that the program kicked off more than half way through my treatments, perhaps the timing was good. I mentioned the swallowing issues and she said she would talk to the oncologist about them, though she advised me that the radiologist would be the first responder to that issue. She also said she would address the ongoing problem of schedules for my doctor visits, chemo treatments, and blood draws being shown on the portal calendar as “unscheduled.” We’ll see.

This business of pain in my chest while attempting to eat is bothersome. I guess I didn’t expect it, even though I knew it was one of the potential side-effects of radiation treatment. I hope today’s visit with the doctor gives me more than,”well, let’s see if this next options gives you any comfort.” I’m looking, of course, for certainty. I’m looking for results. I’m looking for things that probably are not guaranteed in the field of oncology treatment.

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Putting Things in a Different Perspective

Posted on January 29, 2019 by John Swinburn

After my radiation treatment today, I visited a friend who’s in the hospital again after a couple of hospitalizations over the past year.

His first hospitalization came last February after a “routine” colonoscopy that wasn’t routine, after all. During the procedure, the surgeon perforated his bowel. My friend didn’t know anything was wrong until later than night when he felt pain that was anything but normal. Following emergency surgery, he was released a week later and recuperated at home over the course of several weeks.

In December, he was put in the hospital for what the doctors thought was pneumonia. They kept him there through Christmas; he was released, I think, on the 29th. He seemed to be improving over several days, but then had difficulties for several more days. After a period of steady deterioration, he was sent by ambulance back to the hospital on January 25. He doesn’t know how long he’ll be there, but it will be at least several days.

The problem isn’t simply pneumonia. It’s pneumonia resulting from complications with pulmonary fibrosis. That is the scary part. He doesn’t expect to be able to get off of oxygen. He has decided to abandon his plans to build a deck off the back of his house. He just seems really reconciled to the fact that his disease will severely restrict his activities and his comfort going forward. I don’t know enough to argue with him, nor would I even if I did. I don’t know when his pulmonary fibrosis was diagnosed, but I get the impression it was quite some time ago. I think he didn’t believe it would progress by this time.

When I got home from the visit, I looked up the prognosis for pulmonary fibrosis. The “typical” prognosis is that patients live on average of three to five years after diagnosis.

My diagnosis and treatments don’t seem nearly as onerous this afternoon as they did this morning.

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Cancer Journal 19, 2019 and Dinners and Netflix Entertainment

Posted on January 29, 2019 by John Swinburn

Yesterday, the second chemo treatment was administered. It’s a long process, beginning with “backwashing the chemo port,” as I call it. Actually, it’s just cleaning the port and, I guess, ensuring that the contents of the needle plunged into it will flow properly. I felt the nurse stab the needle into the port this time as if a carpenter’s trim nail had been hammered, somewhat gently, into my chest. It felt like the nail made it only part way into the two-by-four trim beneath. 😉 Actually, it wasn’t bad, just an unexpectedly sharp but quickly passing pain.

From there on, it was the “usual,” as if I know what usual is after only the first treatment three weeks ago. I took a pill, an anithistimine I think, and the nurse began the rather tedious process of preparing my body for the onslaught of poisonous chemicals.  I really should document each pouch of liquid they pour into me, but I did a poor job of it yesterday. Maybe next time.  To the best of my recollection, she pumped me full of saline solution first, followed by steroids, followed by something else, followed by something else, and then capping it off with a vile mixture of carboplatin and alimpta. She cleaned the stab wound in my chemo-port, covered it with a band-aid, and then went off to find the Neaulasta, the device attached to my body to deliver a dose of drugs that will fend off infection and boost the white blood cell count (that the chemo drugs reduce). This time, I opted to have it attached to my belly, making it easier for me to check to see what the blinking lights on the device are telling me, rather than asking Janine to stop what she’s doing to check. I was concerned about whether the removal of the Neulasta device would interfere with plans for the next night (tonight), when we plan to have dinner out with friends. Based on what the nurse told us, it shouldn’t. The device should inject me sometime well before 7 and I should be able to remove it afterward.

Our plan was, immediately after the chemo treatment, to go visit a friend who was just admitted to the hospital with pneumonia two night earlier on an emergency basis.  Before the treatment was complete, though, he sent me an email telling me it wasn’t a good time, courtesy of drugs he had been administered and the flurry of activities around his bed. We agreed I’d stop by the next morning (this morning) after my radiation treatment, if he was up to it.

Speaking of dinner, as I was a paragraph or so ago, we plan to go to dinner with friends this evening, early. These are the same friends with whom we had dinner a couple of nights ago (our minister and his wife and two other friends from church and the writers’ club). During that dinner, the male component of the nonministerial couple mentioned that a restaurant on the periphery of the Village is celebrating Mardis Gras with what he described as a spectacular Louisiana menu. Among the celebratory menu items, he explained, were ENORMOUS oysters on the half-shell, delivered daily as far as I can tell, from New Orleans and environs. I’ve very rarely (once) had oysters on the half-shell since moving from Dallas. I love oysters. And jambalaya. And gumbo. And all foods from in and around New Orleans. Before the conversation ended, all our calendars had been adjusted to account for our plan to eat dinner together tonight. It will be an early dinner (we’ll meet at 5:30), so we should be home by or around 7:00, when I will remove the Neulasta device from my gut and will dutifully take the drug regimen (a series of three drugs, separated in twenty-minute intervals) designed to minimize or eliminate the burning esophagyeal pain caused by my radiation treatments.

Yesterday afternoon, after we got home from the chemo treatments, I unpacked the Roku Premiere and set it up on the television I watch (my wife has her own in the room we call her “nest”). The purpose of buying the Roku was so I could (I hope) eliminate the stuttering and stopping of movies and series I want to watch on Netflix. I got Roku set up and working just fine, but either the chemo treatment or the fact that I didn’t sleep well the night before or both conspired to quell my television thirst. I went to sleep in my chair, awakened only to the call of dinner. After dinner, I tried again ever-so-briefly to watch television, only to awaken well after 10:30 to discover my wife had already gone to bed.

One day, though, either while I’m in the midst of cancer treatments or after I’m done and feeling “normal” again if that feeling ever returns, I’ll spend time watching films and series I think will appeal to me. I am not committed to watching anything all the way through, though. If I like it, I will watch it. If I find it boring or otherwise unappealing, I won’t. So there you go. As for what I plan to explore on Netflix in the not-too-distant future, they include:

Fauda (season 2), Breathe Normally, Black Earth Rising, Occupied (season 2), Borderliner, Ozark, Close, Deadwind, Minimalisim: A Documentary About the Important Things, 1983, Justice, Roma, When Heroes Fly, Innocent, The Paper, Trotsky, Tabula Rasa, El Ministerio del Tiempo, Peaky Blinders, Wild District, Mad Men, Weeds…there are more, dozens more.

Posted in Cancer, Film, Health, Television series | 2 Comments

Just Asking the Question

Posted on January 28, 2019 by John Swinburn

I read this morning that the Postmaster General blamed the massive and growing deficits of the U.S. Postal Service on a business model mandated by law.  Postmaster General Megan Brennan said. “The flawed business model imposed by law continues to be the root cause of our financial instability.” I think she has a very good point. She runs an organization that is restricted by law from adjusting to a rapidly changing business environment. Railroads suffered from operating as though their environment did not matter when, in fact, it did. They almost died as a result. Passenger rail, as much as I hate to say it, effectively did die in most places in the U.S.

I wonder what other institutions might be at risk of becoming archaic in the absence of change? I wonder whether, for example, the structure of our “democracy” in the U.S. might be at risk of succumbing to its own obsolescence if we, collectively, don’t make some hard decisions about its structure and operation? We treat the Constitution as if it is inviolable, a sacred text that is not subject to significant change. We’ve amended it, but we’ve never considered replacing it. Admittedly, the risks of replacing it or, even, subjecting it to massive revisions are great. Recent calls (that grow louder with every year) for a constitutional convention are based on making changes that would force the country on a radical shift to the right, removing many of the protections now in place. That’s dangerous. But is it possible that, even in the face of that risk, we need to consider looking at the rules that govern our country with a new set of eyes?

Do we want to be in the position of looking back at our missed opportunities and saying, “The flawed business model imposed by our Constitution was the root cause of our  instability and ultimate demise.”?

Just asking the question.

 

Posted in Politics | Leave a comment

Bidirectional Exchange

Posted on January 28, 2019 by John Swinburn

Daybreak is a special time, but so is nightfall.
Both allow us to peer into the universe from
different angles, watching time unfold like
a flower blossom, unveiling secrets made visible
only to those who expend the energy to see them.

If something or someone is on the other side of daybreak
and nightfall, I wonder whether they, peering into
the secrets unveiled by unfolding time, see us and the
secrets we unwittingly share by revealing our curiosity
and opening ourselves to the unknown?

Posted in Poetry, Writing | 3 Comments

2800

Posted on January 27, 2019 by John Swinburn

Here is blog post 2800. The vast majority of my posts have been, in a sense, invisible. That is, no one but I ever saw them. Or, if they were seen, they were seen by people who were misdirected to my blog through online searches designed to find something else. During the recent few years, that may not necessarily have been the case, but in the early years virtually no one stumbled across my blog intending to read my posts. Even more recently, the extremely limited traffic has been, for the most part, accidental. Oh, occasionally, a few friends would make a point to stop by, but this blog has been decidedly schizophrenic from the start, so no one—not even friends—really wanted to read my stream of consciousness blather. For that reason—that I have always known my schizophrenic mode of writing would always be of extremely limited interest—I’ve never tried to develop a “following.” I’ve never tried to market this little spot on the internet.

But I continued and continue to write. I frequently flush the detritus out of my head and onto my blog posts. With 2800 posts under my belt on this blog, I think a committed investigator—a trained forensic psychologist with enormous patience—could read enough of my writing to determine what sort of person I am. I wish a committed investigator would do precisely that and would share the determination with me. I’d like to know more about the guy who writes this drivel.

Considering the sheer volume of stuff I’ve produced, I think it’s likely that I really could find enough material in what I’ve written to compile an anthology that might, just might, be worth reading. I’ve said that before, though. Several times. Despite my failure to act on the assertion thus far, I still believe it. I may be delusional, of course, but I think there’s enough decent writing, married to enough decent thought, to justify the effort necessary to make a book. The question, of course, is whether there are enough people who would be interested in it to make the effort worth my while. The bigger question is whether I’ll ever get off my duff and try to wade through what I’ve written, seeking the gems. Perhaps my failure to do it has been for a reason: that I’m afraid the “gems” I’m seeking aren’t really there. If that’s the case, it may be in my best interest not to push it. Who needs confirmation that a fear is justified? On the other hand, confronting one’s fears may be healing, in a sense.

But with good fortune, I’ll be able to write another 2800 posts in the coming few years, keeping my eyes open for the occasional gem. It’s taken me something over five years to get these first 2800 posts done. I’ll check back in a few years to see how I’m doing. And I’ll try to keep track of any gems I encounter along the way.

Posted in Writing | 4 Comments