Cancer Journal 16, 2019

Posted on January 23, 2019 by John Swinburn

Part I

My wife reminded me to make a note of a new development. This morning, I notice a quite significant pain when I swallow hot coffee and cold water. And pain, though not so significant, accompanies swallowing anything else. The pain feels like it is in my chest, but obviously it must be in my esophagus. I assume it’s a side effect of the radiation treatment. I’ll have a word with the radiological oncologist tomorrow during my “meet the doctor” Thursday appointment.

Today (I’ll leave in just a few minutes), I go in for my 15th treatment, after which I will be half way through radiation. Celebrations are in order! I should have a nice, big shot of Maker’s Mark whiskey! Well, maybe not. But I want one. Instead, I’ll drink my aloe vera juice, which ostensibly should help minimize such things as the burning pain that accompanies swallowing coffee and everything else.

If, after my visit with the radiology techs this morning there’s anything else to report, I’ll continue with a Part II. If not, I won’t.

 

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Borrowing Money or Time

Posted on January 23, 2019 by John Swinburn

I’m sure I’ve written about it before, haven’t I? That I am the sixth of six children? That I was an unplanned intrusion into a family that was more than complete at five? That I was a mistake, probably discovered too late to be corrected? My parents never (that I recall) told me I was an uncorrected mistake, but I was not oblivious to the obvious financial strain that a sixth child had on the family. Not that I did anything to ameliorate the situation. I took far more than I ever gave, but that’s what children do, isn’t it? Yet the natural order usually gives them the opportunity to repay, in one form or another, the value of the investment over the course of the parents’ lives. Adult children can count on being given the opportunity to demonstrate to their parents that, regardless of the sacrifices their parents made, those sacrifices were worthwhile. But that’s not always the case. Parents die too early or children mature far too late or, as in my case, both. That’s the problem with unplanned children and parents who started late. My mother was thirty-one when her first child was born; my father was thirty-six. They didn’t stop having children until fourteen years later, when I showed up. And then, thirty-two years after that, they were both gone.

My folks taught me to be responsible with money. My mother, in particular, taught me that I should expect to earn interest on my money. In her later years, when she occasionally needed to borrow money from me for reasons I don’t recall, she expected to repay me with interest. And I didn’t object. I let her repay me with interest. If I had been the kind of son I wish I had been, I would have told her I would not let her repay the money, much less with interest. But I hadn’t matured enough to realize I should have made the money a gift to her or, in reality, a repayment of the investment she had made in me for almost thirty years. I can’t undo the fact that I actually kept a ledger of how much she owed me. It’s what she taught me to do, but I should have known better. I have no idea what she needed the money for, but I know with some certainty that it wasn’t for luxury items. It probably was to pay the mortgage or buy groceries or put gas in the car. With the exception of the mortgage, things she had paid for me over the years. And, in fact, my folks paid my rent during the lean years. Yet I didn’t reciprocate the way I should have done.

I doubt I’ll ever get over the guilt and regret I still feel for treating my parents’ need for money as just another financial transaction. I was unplanned, a mistake. And that mistake cost my folks the modicum of financial comfort they might otherwise have enjoyed in their retirement. I try to take some comfort in the fact that both my parents got some joy out of having the unplanned sixth child. They didn’t, as far as I know, ever openly express regret that I came along. But I can’t help but think that they would have led lives less burdened by financial concerns if they had just stopped at five. What’s done is done, of course. My regret and guilt won’t change a damn thing. Knowing that to be the case, I wish I could erase that regret and guilt. It’s not something I think about all the time, but when I do it consumes me. It will pass; it always does. I wonder whether it will ever disappear or, at least, recede into memory so deep that it doesn’t so openly intrude on my life.

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I Want a Dog

Posted on January 22, 2019 by John Swinburn

I have not had a pet since I was a high school kid. The last dog I had wasn’t really my dog. It was my brother’s dog, I guess. Or maybe it belonged to my parents. The last dog I considered mine was Buck, a fawn-colored pit bull that was about as friendly a dog as I’ve known. Unlike the breed’s reputation would suggest, Buck was about as aggressive as a pillow. He was friendly with people and with other dogs and even cats, as I recall. He got excited around other dogs, but it wasn’t aggression. It was just excitement. Buck was big, but not huge. If memory serves me, he was about seventy or eighty pounds. Maybe less. Maybe more. Buck died after being struck by a car in front of our house. Somehow, he got out of the house or out of the back yard and wandered across the street just as a car, driven by a high school cheerleader a year or two older than me, zoomed by. I was out in front of the house, calling Buck back home, when I saw him get hit. The car slammed into him as he was crossing the street and propelled him in front of the car, his two front legs pushed back under the rest of his body and his chest and neck sliding along the pavement. He got up and seemed okay. The girl stopped and apologized profusely. Because Buck seemed okay, we sent her on her way and led Buck inside the house. He was fine for a while, but it wasn’t long before he seemed to just collapse. My brother or my mother called the veterinarian, who told us to bring him in. My brother drove and I went along. I don’t remember much about the events leading up to our return home, but I know Buck wasn’t with us. The veterinarian said Buck was in shock and wouldn’t make it. I think he put Buck to sleep, or maybe he died before the vet could do anything. We left Buck’s body there and went home. I was crushed. When I saw the cheerleader at school a few days later, she asked how my dog was. I think I was a sophomore in high school at the time. When she asked, I couldn’t hold it together. I dissolved into sobs. She was embarrassed. She seemed not to know what to do or say. I felt like a fool, sobbing and telling her it wasn’t her fault. I think that was the only time I spoke to her about Buck. Or anything, for that matter. I avoided her. I knew what would happen if I spoke to her again—I would dissolve and embarrass myself with my tears and my uncontrollable sobs.

So, with that as a backdrop, how is it that—almost fifty years later—I really, really want a dog? When we moved from Dallas in 2014, my wife relented when I said I wanted a dog. I’d been saying that for years, but she argued against it because she would have been the one looking out after it much of the time, thanks to my travel schedule. And she wasn’t crazy about dog hair around the house. And the unmistakable smell of a dog, even a clean dog. She is not a dog person.  Anyway, she relented with the caveat that I and I alone would be responsible for the dog’s upkeep. And I agreed. But then we bought a house with shiny wood floors, wood floors that would be subject to being scratched by a dog’s nails (do you call them toe nails on a dog?). She didn’t renege on her agreement to allow a dog in the house, but she suggested I might want to rethink the idea. And, by the way, we had talked about spending quite a bit of time “on the road.” Would I be comfortable boarding a dog for weeks at a time? She was right. Maybe. But now, I don’t really care whether the floor has a few scratches. It has more than a few, anyway. And I know how to find pet-friendly motels. But, still, there are plenty of reasons having a dog would not be a good idea. But, I’m coming around to the conclusion that the benefits of having a companion dog might outweigh the “costs.”

When I was younger, I envisioned having a big dog, a dog that would take up the entire passenger seat in my car when we’d go for a drive—dog right-sized for its companion-master. Somewhere in my assessment of “right-sizing” a dog during those younger years, vanity played a significant role. I don’t know just how, but I recognize that I envisioned a medium-to-large dog as a complement to my appearance. I know, it’s vain and more than a little creepy. But there it was.  But now that I’m older and I can freely acknowledge that I’m too far gone for a dog to make me look attractive, I’m rethinking what “right-sized” means. And I’m thinking a lap dog is right-sized for me. A fairly small dog that I can easily cradle in the crook of my elbow. Size, of course, is only one of many considerations. Demeanor is another. And energy level. And the dog’s level of “attachment” to its master(s). Yes, it has to be attached both to me and to my wife. More on her dog attachment in a minute. I want a dog that’s not going to bark incessantly and that won’t insist on running around the house like it’s chasing a murderous rat. I’m not looking for a watch dog, nor a protector. I want a friend. That’s it. A friend who will always be there for me. A friend who will recognize when I’m down and will try to comfort me. And who will sense when I’m happy and will help me celebrate. And I want to reciprocate. We’ll be an inseparable pair. Well, not really. I don’t want to become the sort of person who throws a tantrum because I can’t take my dog with me when I go to see the doctor or when I’m buying meat at the butcher shop.

All of this talk of getting a dog is, I’m afraid, pure fantasy. Our planned 18-day trip later this year argues against it. And at the moment, my daily visits to the radiologist argue against it. And the thousands of other little pieces of my life that were built around a dogless existence argue against it But, damn, I sense an almost palpable “need” to have a furry little companion. Not a cat. A dog. A dog that will lick my face and that will demonstrate how incredibly excited he or she is when I come home from being away. It’s all a fantasy, though. I can’t even allow myself to consider that I could really get a dog. My wife would not be thrilled if I were to get one. And that’s putting it mildly. But, guess what? If I were to get a little dog, a friendly little critter who showed her as much love as I envision it will show me, she would be utterly smitten. She would become just as attached to it as would I. How do I know this? I just do. I’ve seen her around other little dogs. As long as they are not too friendly (that is, as long as they offer their affection rather than energetically force it upon her), but are friendly enough, she like them. She’s attracted to them. I think she would like the dog I envision I would choose. But, again, it’s a fantasy. She would not renege on her willingness to accept a dog, but she wouldn’t like it. Until she did. But in the interim, she wouldn’t. And maybe I’m wrong. Maybe she would never warm up to the idea. And dogs eventually die. And I know how I react when dogs die. Maybe it’s not such a good idea, after all. But at least I got it out of my system for at least a few minutes. But it’s not really out of my system, is it? No. But on top of being a dreamer and an idealist and a romantic and a fantasizer, I’m a realist. A dog just isn’t in my future. Unless, maybe, it is. My wife would kill me. And, as much as I sometimes think otherwise, I don’t want to die.

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Philosophizing in a Cold Room

Posted on January 21, 2019 by John Swinburn

Recently, I was thinking about good and evil (I use both words advisedly, as I do not attribute to them any religious significance) in humankind. I wondered why, when we as humans generally agree that good is the preferable of the pair, we have not collectively erased evil from the species. Perhaps the only way we can define any given condition in our experience is to contrast it with its opposite. For example, can we understand and appreciate the comfort of warmth as a pleasant experience only when we can compare it with the unpleasant experience of cold?  Neither warm nor cold nor good nor evil are precise. All occupy spaces along a spectrum with no endpoints.

But I don’t think that reason, even if it explains the survival of evil, has ever been made consciously and collectively. Yet people have long written about evil as the yardstick against which good is measured, so the idea is not new.

Shifting gears: would it be possible for us to “breed evil out of the species” through a program mimicking the way in which new breeds of dogs are bred to exhibit certain traits and eliminate others? The very idea of controlling human traits through breeding is anathema to us, thanks to monstrous experiments conducted by the Nazis in Germany and our own scientists in the forties and fifties. And others. But what if any such programs were made voluntary? Would selective breeding be so offensive then? The arguments against even allowing such an idea to enter my head are filling the streets of America even as I type this sentence. How dare I even entertain the idea?! I can hear the chants now: “People who allow their minds to go to THAT dark place should be shackled and chained in dungeons!”

I suppose the idea of actually “breeding evil out of the species” is one for ethicists to debate. Given the entrenched attitudes about life, when it begins and ends, and the extent to which we (the collective we) should control it, the argument will never end. (We can’t even agree whether we ought to control diseases through vaccinations against them, for God’s sake.) But back to the original point. Not that it matters. Even if we could “breed evil out of the species,” would it last? Would the absence of evil make it, then, impossible to understand good, inasmuch as the concept would have no counterpart against which it could be compared? And would that, then, lead to humankind creating a counterpoint to our goodness? I think we would, indeed, figure out a way to manufacture “evil” as a means of assigning value to “good.” I believe that’s essentially what humankind has done over the eons in manufacturing gods. By creating gods who articulate what constitutes good and evil, we assure ourselves that the necessary contrasts will always be available to shore up the morality we can’t maintain on our own.

And that’s enough philosophizing in a cold room for this morning. I have yet to finish my now cold first cup of coffee, make breakfast, and shower, shave, and get dressed in preparation for my thirteenth radiation therapy session. Just two more sessions and I’ll be half way through radiation. And, after next Monday’s chemo session, I’ll be half way through chemotherapy. Even though I feel much less fatigue than I felt just a week ago, the minor but constant pain is beginning to wear on me mentally. Will it ever end? I worry that it won’t and that I’ll just have to get used to it. And that is a very depressing thought. In a Zen moment, though, I am telling myself to settle in to the experience and accept what is now and not worry what will be, for there is nothing but now which which to be engaged. The key to this conversation with myself is this: do I believe what I’m telling me?

 

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Slinking Back

Posted on January 20, 2019 by John Swinburn

Twice since I deactivated my Facebook account a week ago, I absent-mindedly clicked on the Facebook logo on my desktop, then clicked again when the pre-populated login screen popped up. Instantly, I was on Facebook.

When I decided to deactivate, I made a point of removing the login from my phone because I learned during previous Facebook vacations that my phone did not require my intervention to log in. But my fingers’ automatic behaviors require more training than a simple; I guess they require clunky gloves that restrict their movement.

Except for those mindless logins, which I quickly corrected by deactivating my account again, I’ve been off Facebook for about a week. And that may be enough. I’ve realized during that time that making contact with companies to complain about products or services is, apparently, far easier through Facebook than through the old tried-and-true mans of going to company websites. What ever happened to websites as prime elements of company communications with customers? Or, for that matter, telephones?  Everyone says some variation of “contact us on Facebook for more details or to reach our customer care team.” Ach. That shift to Facebook for customer service flies in the face of social media Luddites like me. I suppose I can’t legitimately claim social media Luddism, given that I’m writing a blog post.

I’ve especially missed the regular interaction I enjoyed with a group of “old fashioned” bloggers. I’ve been delighted, though, that some of them have made their way here to comment (pre-Luddism, comments on our respective blog posts were made to our Facebook group, though I was inconsistent and commented both places from time to time).

An interesting aspect of my admitted very brief week-long departure from Facebook is that I’ve noticed that I felt that ties to other people, as well as my lifeline group, seems to have been severed. People I followed just to see what’s up in their lives disappeared. Facebook, it seems, was the only contact I had with some people, even people who live near me. Suddenly, there was nothing. No telephone contact, no email, nothing. That shouldn’t have surprised me, because the only regular contact beforehand had been Facebook. But I had imagined we were in regular touch by virtue of posts, in both directions, on Facebook. Yet these were posts directed not specifically from me to them or them to me but to “everyone out there.” So, it seems, we (or at least I) thought we were communicating, but that was an illusion. Facebook, it seems to me, provides an acceptable stand-in for real interaction. It offers of a means of convincing ourselves and those with whom we “interact” that we are engaging with one another. But are we?

Sometimes. When members of my blogger group on FB engage with one another, we really engage. Our Facebook posts and comments generate conversations the way blog posts once did (and, I admit, still do on occasion). Facebook provides us with a single place to gather, the value of which cannot be overstated. Without a single meeting point, I doubt we would engage the way we do. Facebook, I should add, didn’t create our group to provide that meeting point; it’s simply the tool used by the group’s founder (thank you, Chuck!) to form a cohesive group of like-minded (in many respects) bloggers.

I left Facebook a week ago with the intent to take a break for a while. I didn’t know if it would be a month or a quarter. It turned out, I think, that it will be only a week. It’s now up to me to filter out the crap that made me decide to take a break and, instead, focus only on the very positive aspects of the platform. Later today, I’ll intentionally log in to Facebook to see what I missed. But rather than scroll through the feed, I’ll go directly to my blogger group to see what’s new there. I’ve visited members’ blogs during the last week, so if I missed anything I’ve missed conversations. I feel refreshed.

One thing I accomplished during the last week, despite my break from Facebook, was to contact Lowe’s customer service by email to lodge a complaint about what I considered miserable customer service. My wife ordered a washing machine in October (with a promised mid-November delivery date). When the delivery date came, so did an email saying the delivery had been delayed until the end of the month. And then announcements of more delays, with no explanations. Finally, it was delivered last week, with some quirks in the process. I complained, via email, that a two month delay without even a phone call or an apology was unacceptable. The outcome was an offer of a twenty-percent discount on the machine, refunded to our credit card. I was pleased. Even without going through Facebook to reach customer care, I got some satisfaction. There’s hope for us, still.

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Real Life Lessons

Posted on January 19, 2019 by John Swinburn

Let me be unkind for a moment, if you don’t mind. I feel like expressing my perceptions of a guy with whom I’ve shared space in the waiting room while lingering in anticipation of my radiation therapy. Don’t assume I’m simply unloading, though. I learn from myself, even from the most base aspects of my personality.

The guy, who I’ll call Redneck Gorilla, accompanies a wheelchair-bound elderly man. I’ll assume the old man is a relative. Redneck Gorilla, who reeks of cigarette smoke, sprawls on the waiting room chair in a way that resembles, in my mind. an octopus filling every available space in a small jar. Surely you’ve seen videos of octopuses squeeze into jars far smaller than you thought possible, right? Well, Redneck Gorilla fills every available surface of the chairs and then some. He sits in the chair, leaking his cigarette-laced effluvium into its fabric, watching country music videos on his phone. I notice that much of the music seems to promote the “good ole Southern boy” persona, with an occasional reference to Neil Young and the fact that “Southern man don’t need him around anyhow.” I’ve seen this thirty-ish guy several times and, without fail, his demeanor is generally what I’d call macho-surly-unfriendly. His response to my “good morning,” twice, was to glance up and glare, then go back to his phone. I call him Redneck Gorilla out of pure, unmitigated bias. Redneck because of both his behavior and his appearance. He’s nearly bald, his remaining halo of hair shaved to the scalp, a perfectly respectable style; but, when coupled with his underslung jaw and his bloodshot eyes, he is, in my prejudiced eyes, the epitome of stupid and redneck, combined in one spherical package. I use the term Gorilla because I imagine his arms hanging down by his side, the hairy knuckles dragging the ground. Yes, I judged this character from his appearance and his willingness to share his stench with the rest of us in the waiting room. I am guilty. My judgment is unkind and reprehensible. Fortunately for me, the man he accompanied to the radiation center had his last treatment on Friday. Now, let me turn my harsh judgment of the guy on its head. Whether he wanted to be there or not, he was there for the old man. Despite my assessment that Redneck Gorilla is among those humans whose redeeming features number in the low single digits, the guy was there for someone else. Maybe his demeanor was shaped by the fact that he’s afraid of losing the guy who he accompanied to radiation. I’m trying to give him the benefit of the doubt. Maybe he is, at his core, a good person. Maybe. But he does a fine job of hiding it beneath a veneer that I find offensive. I try to be better than I am. Often, though, I fail miserably. How would I react, I wonder, if I learned Redneck Gorilla is facing his own cancer diagnosis, a far worse diagnosis than mine? I think I would even more embarrassed at my pettiness than I am.

Now, after going through the exercise of judging someone else on the merits of appearance, odor, and limited interactions, it’s only fair to consider how other people in the waiting room might judge me. I’m not very talkative, so I can see how my limited verbal responses to the few comments others have made might be considered unfriendly. I can envision a guy thinking to himself, “This guy acknowledged my comment, but that’s all. He seems to have made a point of letting me know he wasn’t interested in talking to me.” That’s not correct, but he might understandably think so. And he’s not alone. I’ve had very few conversations with others waiting for treatment. I’ve listened to a couple of them talk about their conditions and their treatment, but I’ve not shared much with them. Perhaps they find me stand-offish and unfriendly. I wonder what names they might have for me: “Aloof Goof.” “Silent Scumbag.” In reality, though, I doubt they have any names for me. I doubt they even paid much attention to me. It’s not about me. People in a waiting room are not placed there to scrutinize me and pass judgment on me. That’s my job. 😉 I’m the one who’s behaving like the jerk I am judging.

There’s an aphorism: “You never know what someone is going through. Be kind. Always.” It’s one I try to follow because I believe it merits a place in my consciousness. People can behave in ways that bother, offend, or otherwise annoy me/you for reasons beyond your capacity to comprehend. Yet try as I might, I fail to acknowledge that reality in my day-to-day life. By judging the guy who smells of cigarettes, I make all manner of assumptions about him, yet I know virtually nothing about him. It bothers me that, despite knowing how I should be and how I should behave, I nonetheless act in ways contrary to what’s “right.” I suppose regular self-reminders are in order.  Unfortunately, even with regular reminders, I keep running into people who challenge the generosity of the aphorism mentioned above. I keep encountering people who just seem to be pigs. And I react, at least mentally, accordingly. But, still, I have to remind myself that I don’t know what they’re dealing with. I have to try to be compassionate. I have to try to exercise some empathy for whatever plight they may be facing.

It’s easier to be judgmental than to be kind. It shouldn’t be. Spreading kindness by being kind is more likely to make a livable world than spreading judgement by being judgmental.

Posted in Cancer, Civility, Compassion, Empathy, Health | 4 Comments

Cancer Journal 15, 2019

Posted on January 18, 2019 by John Swinburn

This morning, as I was getting ready to take a shower, I noticed that the red area on the skin on the side of my chest, beneath my right arm, had grown in size. I looked closer and noticed a similar rough, red, patchy area on the underside of my arm. It was in an area that comes in contact with the original red splotch. And then I noticed a much smaller, but very similar pair of red splotches mirrored on my left side.  What I originally thought was a “burn” byproduct of my radiation treatment no longer seemed to make sense. I was getting a series of rashes that looked like they had developed, for the most part, overnight. I decided I needed to ask my health care team what gives.

And so I wrote my oncologist a note and left it with her office when I went for my radiation treatment. The note covered multiple issues. While I was in radiation, my wife texted a message that the oncologist’s office had called with answers to the questions I left for her.  I had already asked the radiologist’s nurse about it and she suggested I visit with him after treatment, which I did. He looked at the rashes and asked questions about whether I had changed deodorants or bath soaps. He then called the oncologist. They chatted, during which it was apparent neither of them had any idea what might be causing the rashes. They agreed I should see a dermatologist. The radiologist’s nurse called a dermatologist to make an appointment with a nurse practitioner. First available date: the afternoon of February 1. So I have an appointment. In the interim, I’ll try my own remedies, using cortisone creams and the like.

The oncologist’s response to my question about why she had asked Caris Life Sciences for “molecular intelligence.” It has nothing to do with current treatment. Instead, it was requested to provide data in the event my cancer recurs. If that were to happen, the data might suggest appropriate treatments from what might then be available.

Nothing else new for the time being.

 

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Thinking It Through

Posted on January 18, 2019 by John Swinburn

I don’t know precisely when it happened, but sometime within the past several months (or maybe the past few years) I seem to have lost the ability to sit at my computer and produce pleasing, mellifluous language. I think I really did have that “gift,” if that’s what it was, and it seems to have left me. Now, when I sit at my computer to write, language more befitting a technical journalist than a creative writer appears on the screen. I just don’t know what happened. I miss my ability to string language into sentences that, to me at least,  please the ear, as if they were carefully woven into rich tapestries of sound and meaning and emotion. Today, my words fall into chaotic mounds as if their context has been stripped from them and they have been left to decay into meaningless syllables.

When I make a concerted attempt to write “flowery” prose, I fail miserably, so much so that I delete entire pages filled with dead words dressed up to look alive, like a corpse in a casket prepared for viewing. Maybe I’m trying too hard, or maybe I’ve just lost what once was an innate ability to write. Good writing involves more than stringing words together in a pleasing way. It relies more on emotion than technical skill. Perhaps that’s what is missing. Perhaps the emotions that fueled my writing have withered or have been used so much that they’re covered with calluses.

Writing has become work. It was never work before. When it was joy, it flowed. But it’s work now and it no longer flows. I have to extract it from my brain with heavy equipment, breaking through the layers of rock in search of tiny veins of ore that might, if I’m lucky, contain enough value to make the exploration worthwhile. But there’s never enough value to warrant the effort. Only when it flowed freely, without being coaxed or forced, was it valuable.

I don’t even know if I want to write. That could be the problem. Maybe I’m writing because I think that’s what I want to do when, instead, I’d rather be fishing or cooking or searching the back roads of country for the kid I used to be. That’s the key.

Mining the emotion without the tools, that’s it. That enables me to feel it and, when I feel it, it breaks my heart. That’s what will enable me to not only want to write but write the way I used to write. I feel it well up in me when something triggers an emotion too intense to ignore. When my eyes begin to brim with tears, that’s when I need to put words down. Not when I’m starched and dry and satisfied. I guess I need to peel back the protective layers I’ve intentionally wrapped around myself. I thought they were protecting me but, instead, I suppose they may have been smothering me.

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Cancer Journal 14, 2019

Posted on January 17, 2019 by John Swinburn

Thursdays are “talk with the doctor” days after radiation treatment. First, a nurse weighs the patient, then another nurse queries the patient about any problems or questions, then a dietitian asks probing questions about the patient’s appetite and discusses his weight loss, and then the doctor comes in for a brief visit. At least that’s the way it works with me. I don’t know if the same protocol is followed with other patients, but I suspect so; that, or something very close.

Today, I was advised that I’d lost three pounds since last week. For me, that was a positive. For the dietitian, not so much. She wants me to drink a “Boost” a day. I told her I am eating quite well, better in fact than I should. The weight loss, I told her, probably is attributable to the utter absence from my diet of alcohol. I tend to enjoy my wine with a vengeance, which tends to wreak havoc on my mid-section, making it impossible to button my pants over my belly. Instead, I wear them low, over my hips. It has always been thus, though, so it’s not a new development. The dietitian—Jennifer is her name, I think—was unmoved by my effort to blame the absence of red wine from my diet. I promised I would consider adding Boost or Ensure to my diet, a lie that seemed to sufficiently satisfy her and cause her to bid me adieu. The doctor’s visit was short and perfunctory. When he asked if I had any questions, I asked whether, after completing my 30 radiation treatments, I would need to see him again periodically. He said I would need to see someone, probably my oncologist, every three months for five years, at which time, if all goes according to plan, I can be considered “cured” of cancer. Every three months for five years. That will involve, at least to some extent, blood work, CT scans, and other such invasive or intrusive or just plain annoying medical processes.

Other than the gloomy prospect of at least quarterly doctor visits for five years (that’s at least twenty visits, in case I’m counting), my news is good (knock on wood). My fatigue seems to have diminished considerably and my general state of feeling reasonably well has stabilized for now. I’m not particularly peppy, but neither am I spending most of my time in a recliner or heading toward one.

Just nineteen more radiation treatments. Hallelujah! I just wish the pains in my gut would disappear. And I’m occasionally finding that I have “stuff” in my windpipe that “rattles” each time I inhale and exhale until I manage to force it out with earthshaking coughs. I failed to mention that to the doctor. I probably should. There’s next week for that.

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Still Walking Each Other Home

Posted on January 17, 2019 by John Swinburn

A quote from Ram Dass is on my mind this morning. “After all, we’re just walking each other home.” Those words often find their way to my consciousness, but I never seem to be able to fathom precisely why they pop into my mind. I recall once reading them in a message from a friend, who quoted a Mary Gauthier tune whose lyrics included them as “Ain’t about the money, ain’t about who’s right or wrong. We’re all just walking each other home.” When I read the message that quoted the lyrics, I felt extremely close to my friend, as if the words bound us in a way that exceeded my capacity to understand but, still, felt somehow sacred, spiritual…almost holy. I welcomed those feelings, foreign though they were to an avowed atheist. I’ve since come to appreciate that a sense of awe and wide-eyed wonder at the world and the relationships we experience in it are not reserved for the religious.

At any rate, the words were on my mind this morning. So I used my computer to explore a little, trying to uncover a few more bits and pieces about them that might explain their appeal to me in general and in particular why they resonate with me this morning. I came upon a blog post by an Episcopal priest, Linda Taylor, who said this about those words:

We’re all going to the same place, and we’re all on a path. Sometimes our paths converge. Sometimes they separate, and we can hardly see each other, much less hear each other. But on the good days, we’re walking on the same path, close together, and we’re walking each other home.

Her comments triggered a thought about something I recently wrote about friend versus acquaintance. The difference, I think, is that friends are on the same path, close together, and we are, indeed, walking each other home. Acquaintances may be on the same path, but we’re not walking together. Somehow, writing those words just now seems trite, on the one hand, but utterly profound on the other. I can live with passing trite as long as profundity remains, as solid as a rock.

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Cancer Journal 13, 2019

Posted on January 16, 2019 by John Swinburn

Just twenty more radiation treatments to go. I’ve completed one third of them. The skin on my chest and back can attest to the fact that I’ve had treatments. It’s tender and, in a place or two, slightly inflamed as if I’ve been sunburned. I gather it will intensify. I’ve been less “beat” for the last two days, but past performance is no guarantee of future results. We shall see.

The possibility of switching oncologists got a bit more complex today. I got a phone call from Caris Life Sciences, which called to get help confirming my supplemental insurance information so they can call for pre-approval of a “molecular intelligence” assessment of the tissue taken from my biopsy. Apparently, based on what I’ve read on the company’s website, the assessment was ordered by my oncologist. The assessment is, as I understand it, undertaken to determine options with regard to immune checkpoint inhibitors. I gather, from this information alone, that my oncologist is exploring possibilities beyond the chemo-therapy and may be considering immunotherapy (which I gather can be both expensive and potentially dangerous with respect to side effects). At any rate, before I boot her from my care team, I want to ask her some more questions: 1) What is this Caris Life Sciences issue all about? 2) Was there any reason I was unaware of it and learned it from Caris instead of my health care team? 3) Am I the only patient you’ve had who has experienced serious problems in communications in both directions?  My next visit with her won’t be until my next chemo treatment, January 28. I guess it will wait.

I got my hair cut yesterday. Not bald by any stretch, but short enough (on the sides) that shaving won’t be particularly noticeable if my hair begins to fall out. But I couldn’t bring myself to cut the top that short. No big deal, but just another thing on my list of things to think about.

 

 

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Thoughts and Emotions and Misplaced Ethnic Pride

Posted on January 16, 2019 by John Swinburn

Blogs aren’t sacrosanct places, but those created and tended for personal, versus commercial, purposes tend to enjoy at least moderate degrees of privacy and, when comments are made, civility and respect. Maybe readers of personal blogs are conscious of the fact that bloggers take significant emotional risks by revealing their private thoughts in potentially public places. That appreciation of the risk, perhaps, engenders respect or compassion or a sense of connection or community that seems rare on other social media platforms. I suppose I’m writing this as ongoing justification to myself for abandoning Facebook for the time being. Words I might dash out in a Facebook post have the potential, in my case, of reaching about 140 people, the majority of whom I know in the most superficial, casual way. They include friends of “friends,” the latter group consisting primarily of casual acquaintances, with a  few actual friends in the mix. I’m less inclined to bare my soul to 140 acquaintances than to the half dozen or so regular visitors to my blog and the several dozen one-time-only stumblers on who leave, never to return. Of course, the idea that I’d bare my soul to anyone online, in any form, may be anathema to some. And I can understand that aversion. But, for me, writing what’s on my mind and letting a tiny piece of the world see it is like throwing a life preserver out on open water and hoping someone will grasp it and reel me in. That may be a bit over the top, but it gets to the point. Even if I’m the only one who reads what I’ve written and my words cause a catch in my throat or make my jaw set in determined anger, my words connect with someone, if only myself. I’m sure it’s utterly impossible for me to adequately explain an emotion that I can only vaguely recognize, much less understand, in myself. I think I’ll give up and move on to something else that’s just as difficult to understand and explain.

***

A committed reader of my blogs might, if pressed, remember my penchant for writing about my appreciation of and reverence for Hispanic culture. I cannot begin to explain why I find Mexican culture, in particular, so fascinating. My respect and regard for the language and traditions of Mexico (though I don’t pretend a deep knowledge of them) are as deep and broad as my appreciation for any culture. I’ve found myself daydreaming from time to time that I discover a Mexican heritage I never knew I had and I am deeply proud of that heritage. And then I awake from my daydream to disappointment. I don’t even speak Spanish. But I listen to the language and I am in love with it. And I listen to Mexican conjunto music and feel the chords and rhythms course through my veins. I watch and listen to ranchera music videos, with couples dancing to the music, and I am mesmerized. I read about Mexican traditions, even religious traditions that otherwise would be more than a little off-putting, and find myself immersed in “my” culture and filled with pride. I connect with the poor people on the border, struggling to come across to try to find opportunities for their families, and I weep with them. I don’t pretend to understand the culture. I’m just fascinated with it and feel intense pride that it is what it is. I get angry when I see or hear evidence that the culture is challenged in some way that might eventually destroy it. I feel an intense desire to be of a culture that does not belong to me.

Maybe I would feel the same affinity were the culture south of the border not Mexican but, instead, Romanian or Czech. Perhaps my attachment to another culture is symptomatic of the fact that I don’t feel a sense of connection to my own. Not necessarily just a lack of connection to my own culture, either. Maybe I can’t define my own culture. Maybe I feel that my own culture has no defining characteristics. It is an ill-formed gelatinous mass with no distinctive qualities; a featureless blob whose most obvious idiosyncrasies involve an apparent rejection of anything from other cultures. Perhaps I sense that my culture, if there is one, has scooped out all content from a bowl and filled it with self-aggrandizement and contempt for anything “other.”

I used to be proud to be an American. I was fiercely proud of the words etched into the Statue of Liberty:

“Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

I felt such intense pride that I was of a nation that welcomed the down-trodden and promised them opportunities if they would just join us and work toward achieving an American dream for every person. But that promise has been so corrupted by politicians and twisted capitalists that even the descendants of people whose lives were made tolerable by the principles embodied in those words have turned against the concepts. The “average” American worker, it seems, has been lied to so often and fed such stories that social democracy is no longer viewed as the bedrock of our political system. Instead, oligarchs and their co-conspirator evangelical money-driven theologians have captured the soul of this country and are draining the blood out of the working class at the same time members of the working class are unwittingly helping with their own subjugation and enslavement.

***

I’m off to my tenth radiation treatment shortly. Just twenty more after today. Last night, a couple who used to be leaders of one of our former client associations came over to visit and they brought us a wonderful meal of salmon, rice, green beans, corn-fritters, and dessert brownies. I can’t get over how incredibly moving such a gesture is to be. They heard about my lung cancer and wanted to do something to show they were thinking of us. Goodness abounds, even in the midst of ugliness and pain.

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Slinking Away

Posted on January 15, 2019 by John Swinburn

After weighing the matter at some length, I deactivated my Facebook account a while ago. The downside is that some people with whom I’ve developed what I hope has been a mutually beneficial relationship probably will disappear from my daily life. That absence will leave a void and I will miss them. The upside is that the removal of Facebook will leave me in a more serene state of mind. Even though my level of activity on Facebook has diminished dramatically during the past month or two, I’ve allowed myself to watch its feed from time to time. And that has been as upsetting as always. By disappearing, at least for a while, I’ll reduce by an order of magnitude the troublesome frenzy of Facebook nonsense.  I’ve done this in the past, but I’ve always informed people I was doing it. I don’t know why I told them. It’s not as if most people care whether I’m on FB or not; but I suppose I believed they were paying more attention to me than I to them. They weren’t. Some may notice my absence and, if it’s sufficiently interesting, they can find me. Others won’t. And that’s fine, too. I follow others on their blogs, etc., so it may be possible we can keep in touch without even realizing FB has gone by the wayside. We’ll see.

In the meantime, I think training myself to leave FB alone for a while will be valuable for me. I hope so. We’ll see.

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Fanciful Thought and Real Fantasy

Posted on January 15, 2019 by John Swinburn

The Baby Boom Generation in the U.S. grew up believing that the United States had developed into an irrepressible force in technology, among other things. We were taught (brainwashed might be a better term) that U.S. innovation and commitment were unparalleled in the world. Our country was better than every other country and would always be so. The United States of America was both the world leader in everything worth leading and held and exhibited the moral authority in all things. We wielded our power only for good. Any political structure that differed in significant ways from our own was dangerous and inhuman. If we weren’t perfect, we were so damn close it was impossible to tell the difference. There was no room for disagreement with our world view nor was there any space for philosophies that varied from the ones that drove our unquenched thirst for development. It was our way or the wrong way. Somewhere along the line, though, compassion and humanitarianism and morality lost focus.

I remember many years ago assuming that only the U.S. had large, modern cities. Only the U.S. built skyscrapers and invested in technology. I assumed people in other countries, notably in China and Russia, lived under constant fear of repression and, moreover, their lives of repression played out in dingy flats with no heat, no air, and inadequate plumbing.

Today, I believe the U.S. is staking its claim to becoming a failed state. At the same time, China and Russia are thriving, if deeply flawed in some respects. But, then, so are we. China is making incredible strides in artificial intelligence (AI), leading the world in both its development and its application. A study by the Boston Consulting Group (Mind the AI Gap) puts China ahead in AI, with 85% of companies actively involved in AI, compared to the number two U.S., with only 51% of companies so involved.

It’s not just technology, though. It’s the degree to which our respective populations are developing intellectually and collectively prospering. China has its share of extremely rich people against a backdrop of extreme poverty. But so does the U.S. And I think the evidence may suggest China is lifting more people out of poverty at the same time the U.S. is forcing more people into it. I don’t know of a way to compare the shift in wealth between the two countries, but anecdotal evidence shows a growing middle class in China, coupled with a huge increase in demand for consumer goods. That’s not necessarily a good thing, in my opinion, though.

I wonder whether, in China, the value of compassion and humanitarianism are given sufficient attention? I wonder whether the growth in technology is occurring at the expense of human decency? For years, I’ve felt deep admiration for many eastern philosophies that seemed, in my view, to value compassion to a much greater extent than they valued consumerism. But have I been wrong? Or, if I’ve been right, is the focus on technology robbing eastern cultures of the bedrock values upon which they were originally based or from which they grew? I’m just thinking with my fingers. I wish I could take a peak ahead two hundred years. I think the U.S., by that time, will have long since witnessed its decline as a major contributor to the world. If it remains a player at all, it will be one that struggles to save face. Instead, it will try to bask in its fading glory as the “founder” of modern democracy. China and Russia and perhaps other eastern “powers”  (but mostly China) will have emerged from the limelight as world leaders.

I don’t look upon the decline of the U.S. as necessarily negative; it is simply a “natural” metamorphosis of society. But, if I were able to snap my fingers and make the world a more just and livable place, I would merge societies into a global family committed to taking care of the planet and its inhabitants…all of them…with an objective of peace and tranquility. China’s emergence would wash over the world gently. A new global language would emerge so that all people could communicate, directly, with one another. But the old languages would be preserved and honored. Artificial borders between countries would disappear because such borders (which have never had any justifiable purpose) would finally be exposed for what they are: blatant expressions of mindless nationalism.

Yes, I’ve skipped over reality into fantasy. I’m not able to focus my mind sufficiently on reality…or I’d simply rather not, because reality is too painful…so I’m wishing with tears in my eyes that the world might actually live up to its real potential.

I contributed to the lies of the Baby Boom Generation. I accepted them. I allowed them to enter my brain and take up residence there. I wish I could sit with someone who shares my sensibilities and discuss these matters over cups of coffee and savory breakfast treats. But there is no one who shares my sensibilities. I am alone in this world. I am alone, living in my mental cocoon, sucking the oxygen out of the air while desperately trying to break through to the outside. Whether I make it is anyone’s guess. I may crack the fragile edges of the cocoon just in time to see Chinese world dominance wash over us, but maybe it won’t be dominance. Maybe it will be compassion.

 

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Cancer Journal 11 and 12 in Two Parts, 2019

Posted on January 14, 2019 by John Swinburn

January 14, 2019
I didn’t realize until today that I never bothered posting yesterday’s “Cancer Journal.” No matter, it wasn’t particularly insightful. I’ll include it with today’s, just for the record.

I woke late again today, thanks in large part to a continuing wake-pee-sleep cycle overnight. I don’t think it was quite as active as the two prior nights, though. I felt adequate this morning, well enough that I felt comfortable driving myself to my radiation session and the blood work/doc visit that followed. I got in early to the radiation session and, consequently, I was out early, so I went to the oncologist’s office (almost 20 minutes early) and waited. Thirty minutes after my appointment time, I was called back for blood work. The tech asked me to roll up my sleeve. I said I have a port. “We prefer to use needles in the arm to minimize the risk of infection.” I responded that I got the port specifically to use for both chemo and blood draws. She didn’t insist, but close. I agreed. And when I met with the doctor, I expressed my anger. She recommended, after all, that I get the port. She mentioned that it could be used to administer chemo, to draw blood, and for transfusions if the need arose. She apologized that I misunderstood. Misunderstood bullshit! This is about the fourth time I’ve “misunderstood” this doctor, along with my wife, when we’re sitting in the same room. And I let her know I was not happy about it. Ultimately, I said I would accept blood draws from my arms, but I expressed my serious annoyance that I was advised to get a port that would, in all probability, be used for only four chemo treatments. Tomorrow, I’m exploring my options to switch to another oncologist. I am so pissed off I could spit nails, as the saying goes.

In addition to that little fiasco, I mentioned that I have a persistent cough that seems to result from a roughness or rawness in my throat. She immediately assumed it was acid reflux. I told her I didn’t think so. She decided it probably was, so she prescribed a drug to deal with acid reflux.

Then, she asked if I’d seen Dr. Pruitt (the radiation oncologist) yet. “Yes, I’ve seen him several times and have had my seventh radiation treatment.” Oh, she had forgotten I was already getting radiation treatment. She asked the same question last week on the day of my chemo (after which I asked my wife whether the doctor seemed completely disconnected from my case and utterly unable to stay focused on a specific patient’s situation). Does this woman ever make notations in her patients’ medical charts? Is she high on something? And then she suggested my cough and raw throat might have something to do with the radiation therapy. Yes, tomorrow I’m going to explore my options. I’m fatigued, but angry.
January 13, 2019

Today seems to be starting moderately better than yesterday, though the first taste of coffee was only marginally better than yesterday’s disaster, which I threw out. It’s a shame that one of the day’s delights, freshly-brewed coffee, is subject to the nasty effects of chemo-therapy. I’m surprised that, after only a single chemo treatment one week ago, my taste buds are subject to such an assault. Fortunately, as of yesterday at least, avocado and bacon tortas and stuffed bell peppers still taste wonderful. I wouldn’t mind having them again today. But I won’t.

I made the mistake of looking at the weather forecast a few moments ago. It’s much of the same as yesterday in terms of temperatures. I don’t know yet whether yesterday’s bleakness will return. Yesterday, fog enshrouded the house all day. The weather was a perfect parallel for the way I felt; dull, grey, confined, ugly, miserable. I hope today’s weather and my sense of self won’t be as gloomy.

The third sip of coffee showed an improvement. But the aches from spending too much time in bed remain.

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Friends versus Acquaintances

Posted on January 13, 2019 by John Swinburn

Last night, the concepts of “friend” versus “acquaintance” spun through my mind. I won’t try to explain why, because I think the explanation would only serve to erroneously paint me as a depressed skeptic. I’d rather think of myself as a disappointed realist. According to an online dictionary upon which I tend to rely when I’m not particularly fussy, here are the definitions:

Friend:”a person attached to another by feelings of affection or personal regard.”

Acquaintance: “a person known to one, but usually not a close friend.”

Admittedly, the definitions could be more precise, but they serve the purpose of comparison. The core differences are the “feelings of affection or personal regard.” What’s missing in both definitions is the concept of reciprocity. So, I may consider a person—for whom I have feelings of affection and personal regard—a friend while that person may consider me only an acquaintance. Questions then arise.  Are the two of us friends or merely acquaintances? Is it possible for one of us to be a friend and the other simply an acquaintance? Of course it is. And then there’s the degree of affection and personal regard involved between friends. Again, differences may well exist between the two parties to friendship, wherein one is highly invested in the well-being and happiness of the other while the other’s stake in his friend’s welfare measures far lower on the scale.

My definition of friendship differs from the dictionary definition in that I consider factors beyond affection and personal regard in the “equation” that defines friendship. In my romantic world, there would be two levels of friendship. At the first level, friends would have feelings of affection and personal regard for one another, but those feelings would translate into only a moderate willingness to sacrifice one’s comfort or convenience for the well-being of the other. For example, if that “first level friend” were to call me to ask me to come help push his car to a gas station, I might be willing to do it if I had nothing pressing on my schedule and I had to drive no more than twenty miles to reach him (obviously, there’s no fixed distance involved here…only an arbitrary and abstract measure). If those limits were exceeded, I might offer to call someone else for whom the endeavor would be less inconvenient.

But a “close friend” could expect far more from me. I would readily adjust my commitments so that I could go to my friend’s aid. It’s probable that I would be willing to drive to the next town or even the next state to help, if that’s what it took. A close friend can absolutely depend on me to go to great lengths to help.   A close friend is, in many respects, like a member of one’s family, in that the relationship suggests a willingness to commit to a person’s well-being, even at the risk of doing damage to one’s own. And it’s not just willingness, either. It’s the sense that one wants to be there for a friend and that the inconvenience or discomfort that might accompany the act are irrelevant and, in the final analysis, negligible.  Perhaps “love” is not too strong a word to describe the bond involved in true, close friendship.

So, my romantic definitions of friendship suggest that these relationships exist in the real world. And I’m sure they do. But, in my experience, they are rare, Neither “first level” nor “close” friendships have been common in my life. Acquaintances are far more common than friends and far less fulfilling. The paucity of friends, regardless of “level,” leaves big, aching, empty vacuums in one’s heart, or wherever one chooses to suggest emotional attachments reside. The absence of knowing there’s someone who’s available and willing to come to your aid, whether physical or emotional, at any time, anywhere, creates a painful, tender place in one’s psyche. I suppose the best way to describe it would be to call it the embodiment of loneliness.

I’ve written so many times about friendship and what it means, or might mean, that it’s obvious to me that the idea of friendship or the absence thereof has left a raw spot inside me. I wonder how many people feel they are sufficiently close to me that they could call me, day or night, and ask me for help and expect to get it? I suspect the number is considerably lower than the number of people who could actually make the call and get the help they need. And maybe that’s true of me, too. Perhaps there are more people who would be readily available for that midnight call from me than I think.  If either is the case, I wonder why the sense of closeness isn’t more obvious? A sense of commitment differs from a sense of appreciative obligation. I wonder how the disparity between those two concepts fits into friendship?

One day, if life is long enough, I shall explore all I’ve written about friendship and try to make some sense out of what I feel, what I think, and what I believe friendship is. And, if I can make sense of it, I’ll commit to writing my final assessment of the matter. Ultimately, though, a written assessment, based on extensive study, cannot possibly be as meaningful as deeply experiencing the real thing. While I’m philosophizing on the subject, I’ll go on record to say that it’s bloody hard to have even a surface conversation, much less one that digs beneath the surface, about friendship with most men. I think masculinity has been twisted and disfigured so damn much that emotions have almost been completely wrung out of it. I won’t go down that rabbit hole this morning. I’ve done that enough already.

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Cancer Journal 10, 2019 – Lost Day

Posted on January 12, 2019 by John Swinburn

Today might as well have been a fleeting idea, an ephemeral abstraction that never solidified into reality. Today is now lost to a fog, for me. I hope days like today are few and far between. Not only because they rob me of time that’s due me, but because they take my wife’s time with them. I’ll try to explain.

Last night, I awoke at least a dozen times to pee. When I went back to bed each time, sleep was slow to come and when it did, short-lived. I got up well after sunrise and made a cup of coffee. Though it was the same coffee I always drink, it tasted awful. I threw it out. I poured a glass of water, nursed it for a while, and took my morning pills. And I sat, like a zombie, in my recliner for a while. Sometime before 8, I decided I simply didn’t have enough energy to get up and go to a meeting I had committed to attend, so I dashed off apologies and went back to my recliner. My wife awoke later than usual, after 9, and asked me about breakfast. I had planned on making pigs in a blanket, but I didn’t have the energy. She offered to make me some toast and I accepted. After I had breakfast, I sat, again, in a vegetative state until sometime around noon, when my wife made a wonderful meal of avocado, bacon, and cheese tortas. She put forth considerable effort to make a nice meal for me, and I appreciated it, but I was not much company; I sat and ate in silence.

A bright spot for my wife came when her sister sent a message, asking about playing Mexican Dominoes. My wife asked if I would mind having her sister over, considering how low and drained I felt. I knew the break would do her a lot of good and I told her she should do it. We talked a bit and she suggested having her sister stay for dinner; my wife had decided to make stew. I responded to her sister on her behalf, inviting her for both. My wife brightened even more.

After lunch, I went back to the recliner. Still drained and empty. And I felt regular stabbing pain in my gut, as it stung repeatedly by a bee. It was not new, but more frequent than I’m used to. I watched television. I vegetated. My wife told me her sister sent her a message, saying she had forgotten about another commitment and wouldn’t be coming over, after all. And so the brightness dimmed. And I could do nothing about it. I just didn’t have the energy to do more than sit in the recliner with my eyes closed. Finally, I felt sufficiently energetic to get up and record the day for this journal. As I wrote, my wife came in to ask if I would mind leftovers instead of the planned stew. Of course not. I could feel that her energy was ebbing, too. And I’m sure it’s because she’s in my presence. I know how it is to be in the presence of someone whose energy level is so low that it drains the energy of people around them. And today I am the one doing it.

This lost day will be replaced by one that’s better, one in which my energy helps frame the day in a better light. But today feels utterly lost and useless. I hope I don’t have many more of these days, not only for my sake, but for my wife’s.

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Cancer Journal 9, 2019

Posted on January 12, 2019 by John Swinburn

There’s evidence that the chemo may be ready to cause nausea. Yesterday, even before the seventh radiation treatment, I felt a tiny hint of nausea, enough that I decided to take the nausea pills with me to the session. I didn’t use them, though. But I left them in the console of the Subaru. I feel like I might need them now. Or soon.

My sleep last night was, in a word, awful. I was awake much of the night, thanks in part to an ongoing need to go to the bathroom to pee. I slipped off to sleep each time I went back to bed, but only for a short while. I feel drained right now. Tired beyond description. I want to sleep, but I know I can’t. So I’ll try coffee. And after coffee, I’ll wander into the garage to seek out the nausea pills, just in case I need them.  God, I just had a taste of coffee. It is awful! I hope the taste changes haven’t begun.

I’m writing this unpleasant post not to ruin a reader’s day, but to record what I’m experiencing. Just for the record.

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Wrestling with Myself

Posted on January 11, 2019 by John Swinburn

Despite the radiologist’s suggestion that the regimen of radiology will eliminate any remaining cancer, the sense of hopefulness that I expected would come over me hasn’t quite enveloped me the way I anticipated. It’s as if I “know” that neither the radiologist nor the oncologist nor anyone else really “knows” whether the cancer will disappear. And no one knows with any degree of certainty whether it will reappear. Having read quite a lot about lung cancer, I understand that its recurrence is common; far more common than to make survivors of one bout with the disease feel confident that another won’t follow on its heels. I realize that line of thinking will take me no place but down, yet I can’t seem to shake it. It’s not that I’m afraid of dying, it’s more than I’m afraid of living with the uncertainty and the possibility that my life and my wife’s life will be subject to being turned upside down. Even though it’s been just under two months since my surgery, I feel like I’ve been living within unpleasant physical limits for months and months and months. On November 18, I felt fine. On November 19, my surgery changed that. It may have saved my life, but it changed irrevocably changed it, as well. I realize I’m still relatively early in the recovery stage made less natural through the insertion of chemotherapy and radiation therapy, but even with that realization, it’s impossible to overlook the reality that my life has changed.

Yet, as I go for my chemotherapy and radiation therapy, I see people whose lives have been altered far more significantly by cancer than mine, at least so far. I see people who depend on others for motion of any kind, whether moving a wheelchair from one room to the next or moving from a gurney to a treatment table. The lives of those people have changed far more drastically than mine, but it seems to me (from my limited vantage point) that they have either accepted the permanence of those limiting changes or are valiantly fighting their way through. So, I think to myself, given the relatively greater challenges they face I should be less…what? I should be more brave. No, bravery isn’t it. I should just suck it up and live with what life has dealt me. But I am unwilling to do that, at least not yet. I’m angry, but I can’t seem to find an object of my anger toward which to direct my rage. So I just feel like screaming at myself.

After ventilating like I’ve done in the previous paragraphs, I feel stupid and small, like I’ve just completed a temper tantrum about something over which neither I nor anyone else has control. Recovering from both moods is like pulling teeth; if I could slap myself into good sense I would. It’s odd that I feel that I can look at myself as if I were a dispassionate observer and can make rational observations about my emotions and my behavior, but I can’t seem to transform those rational observations into rational experiences of the observed. I’m not even sure what I’m saying to myself here. I’m unclear as to what I think I’m doing by writing rationally through emotion that, obviously, colors the observation and thus the writing about it.

Perhaps I’m going through phases of health-related experience. Maybe like the stages of grief, but I’m not sure grief applies to my situation. Does one grieve over the loss, whether temporary or permanent, of one’s health? I suppose it’s possible. And, if so, can the stages of grief that I remember very vaguely from reading Elizabeth Kubler Ross apply? Maybe the problem with me this morning is that I’m trying to be rational and emotional at once. Maybe it’s difficult or impossible to look at one’s emotions dispassionately while they simultaneously rage and parade through one’s brain.

I wonder what I’ll think when I read this months or years hence? I’ll laugh at myself and be ashamed that I was so utterly unable to control what ought to be nothing more than a passing thought. I wonder how I’d react if, instead of being told the cancer will be conquered, I were told the cancer is terminal? I’d probably be serene and accepting. I don’t think I’d be crazy, because I’d know there’s an end to the engagement, whereas I don’t have a timeline for being “back to normal.” Maybe because “normal” won’t be what it once was.

Enough of this crap. Even if I have to break my fingers, I’m going to stop typing this drivel.

 

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Cancer Journal 8, 2019

Posted on January 11, 2019 by John Swinburn

Yesterday’s sixth radiation treatment preceded a brief visit with the radiologist. The only discussion centered around the fact that I’ve been quite fatigued, off and on. His advice was to push it. Walk. More. A lot more. On the one hand, that seems perfectly reasonable. On the other, during the past couple of weeks, I’ve become winded and incredibly tired just walking (make that shuffling) through the grocery store. So, I’ll have to think on it. And, of course, I must give it a try. Perhaps I’m allowing myself to lose my energy simply by letting it slip away as I sit and think about it. We’ll see. I seriously don’t want to find myself unable to stand, and then unable to get up, from fatigue. I’ll include this matter with my conversation with the oncologist next Monday morning. In the interim, I’ll try to push myself a tad. The much cooler weather of the last few days doesn’t help, in that I find it hard to recover from getting cold; once cold, it seems I’m permanently cold. Ach. Stop griping. Try.

 

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Cancer Journal 7, 2019

Posted on January 10, 2019 by John Swinburn

Radiation treatment number five is now history, with only twenty-five of the scheduled thirty left. As I sat waiting to be called in for my treatment yesterday, a nurse wheeled in a very frail, old man to the waiting room. A few minutes later, a thirty-ish guy and a twenty-ish woman joined him to wait, even though the waiting room is for patients only. The two of them reeked of cigarette smoke. If the old man was being treated for lung cancer, the two people with him are slow on the uptake. As was I, of course; Dad died of lung cancer. That should have triggered my “cease and desist” reflex, but didn’t.  Maybe thirty-somethings are just not sufficiently wise to understand the realities of cause and effect. Maybe I wasn’t smart enough at thirty-one, when my father died, to take the long view forward. But, it’s not always smokers who get lung cancer. But that’s no excuse for ignoring the obvious. Oh, well, I cannot change history. At least it only took me twenty more years to stop, when I was fifty-one.

Last night, for the first time, my wife and I rubbed salve on my chest and back in an effort to minimize the effects of the radiation treatment on my skin. The radiation technicians and nurses told me I can expect to start feeling the burning discomfort on my skin after around two weeks of treatment; the thick, clear salve should (I hope) minimize that. At about the same time, I gather, I might start feeling more and more fatigue from the radiation. I do not look forward to that. As it is, ever since my surgery in mid-November, I’ve had regular cycles of fatigue. One day I’m fine, the next I’m beat and want to do nothing but sit in a chair or sleep.

Our neighbors came over, at my invitation, yesterday afternoon for hors d’ouevres and wine. I had invited them several days ago. By the time they arrived, I was feeling myself spin down toward fatigue. I put on a brave face until they left, though, and then collapsed in my chair. I had asked my oncologist’s office if I could have an “occasional” glass of wine during chemo. The word came back: VERY occasional, not daily, not necessarily even weekly. I drank a glass yesterday. Maybe that contributed to my fatigue. Well, no more wine for a while yet.

Today, after radiation, I meet with the radiological oncologist for a few minutes. I’m not sure what to expect; maybe an update on what, if anything, the X-rays reveals. The techs shoot two X-rays every visit, along with the focused radiation beam regimen. I should be more interested to know exactly what is happening to my body during this process. I wonder why I’m not as curious as normally I would be?

Yesterday was an odd day in that I felt considerably more pain in my chest and side than usual. It was the stabbing, throbbing pain that causes me to twitch and makes my wife think I have the hiccups. It’s not severe, but sufficiently disruptive to interrupt my routine and cause others (occasionally) to notice. I don’t think the radiologist is the one to ask. It’s the surgeon. I may send him an email today. He’s the only doctor who has given me both his email address and his cell phone number and who told me to feel free to contact him with any questions. And he responded to the few I sent him. I respect and appreciate him for that.

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What I’ve Written

Posted on January 9, 2019 by John Swinburn

From time to time, as I thumb through my writing I stumble across pieces of which I am especially proud. Those pieces capture what I believe to be my inner self, the person for whom I’ve been searching my entire life. But they are incomplete, each of them. They serve to point only at a piece of me, a shred of my humanity that can’t be fully understood without knowing how they are connected to the other shards of my self that usually remain hidden. I wonder why I am proud of those pieces, even the ones that paint pictures of someone who seems to be, at his core, fundamentally flawed and irredeemable. I suppose my pride arises from the writing, as much as the substance of what I wrote. Or perhaps it’s the simple fact that, on reading them, they bring tears to my eyes with their ability to extract an emotional response with each reading. One day, I’ll figure it out. And, one day, I’ll have the good sense to marks those pieces in some way so that I can, when the mood strikes me, assemble them all together and attempt to make some sense of them. I get angry with myself when I try to find one of those pieces and realize that, again, I don’t recall enough specifics about it to know where to look. I don’t recall any more about it than it again brought tears to my eyes. Yesterday, or perhaps the day before, I came across one such short…essay, I suppose I’d call it…that affected me in that way. I thought about marking is, but didn’t. And this morning, I can’t find it. It’s “here,” but I don’t know where. Maybe I should make a New Year’s resolution: to get better organized, so I know what I’ve written and where to find it.

Edit: I found the piece I wanted to find. My Sovereign Sky. It won’t bring tears to your eyes the way it did to mine, but that’s all right; that’s not what I was trying to do.

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Cancer Journal 6, 3029

Posted on January 9, 2019 by John Swinburn

Yesterday, I had my fourth radiation treatment, which went without a hitch. I told the technicians about my conversations with the center staff (both chemo and radiation nurses) and they seemed to know nothing about the discussions. They seemed unfamiliar with the Neulasta device on my arm, but were unphased that it was there and went about their business of doing X-rays (2 each radiation session), followed by directed radiation beams at the cancer.

I got back home in ample time to change into a short-sleeved shirt so my wife could monitor the Neulasta device for leakage, etc. As scheduled, it started beeping about 5:15 and two minutes later, it began a 45 minute slow-speed delivery of the drug into my arm. No leaks, no problems. When it was time to remove it, my wife spent several minutes working on the adhesive around the edges to remove it. We followed the step-by-step instructions to get it off my arm. One of the last instructions said to “call your healthcare provider immediately” if the needle that delivered the Neulasta was visible. It was. So I called the by now closed office, explained the situation to the answering service, and left my phone number. Shortly thereafter, the doctor on all called me. She asked me a few questions and assured me that all was well. She asked if I had been given a sharps container to discard the device and I said I had not. She asked me to put the  device in a container, careful to cover the needle so it would not stick anyone, and return it to the office on my next visit. And that was that.

So far, I have no evidence of any greater fatigue than before, no nausea, and no other symptoms. Still some pain related to surgery, etc. but nothing untoward.

Today, I’ll go in for my fifth radiation session and drop off the Neulasta device while I’m at it.

I still have no stamina and get short of breath with only minimal exertion. I do not like that in the least. But I assume that, once all this treatment crap is over, I’ll be able to rebuild my strength and stamina and life will return to some semblance of normal.  That’s my hope and my plan.

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Nordic Dreams

Posted on January 8, 2019 by John Swinburn

Some of my stories, or maybe they are dreams, have delved into Nordic characters with whom I feel deeply connected, despite having no demonstrable physical or ancestral connection to the Nordic world. I attribute some of my proclivities toward rather unusual gastronomic delights (gravlaks, pickled herring, salted torsk, fårikål, etc.) to an unknowable link between me and Norwegian elements adrift in the universe. I imagine that my culinary interest in Norwegian delights owes its origins to a single strand of DNA from the corpse of an old Nordic sailor that made its way through the universe from the old man’s final resting place, into the soil, up through the roots of an edible vegetable, and finally wound up in a bowl of stew in front of me. When I lifted a spoon to my mouth, the man’s entire experience flooded through the nutrients in that root vegetable concoction and through my  cellular structure, creating an ironclad connection between me and Nordic culture in general and Kolbjørn Landvik in particular. Thanks to that chance of nature, from time to time Kolbjørn’s dreams fill my brain and his emotions flood my memories. If you’ve read what I’ve written about Kolbjørn Landvik, you’ll know almost nothing about him and, consequently, very little about me; only that there’s a connection. Kolbjørn Landvik was Norwegian. My memories of his youth and his later years I attribute to my DNA recollections of my time in Norway.  I learned a few days ago, thanks almost entirely to a chance landing of a randomly thrown dart that landed in a village in Manitoba, Canada, that I also have connections through Kolbjørn, to Iceland. Let me explain.

As I was exploring the world one recent morning from the comfort of my study, spinning a colorful old cork globe with my fingers, I threw a dart at random at the whirling sphere. The tip of the missile landed on Gimli, Manitoba on the shores of Lake Winnipeg. Curious about the place I was about to explore, I sought information from Mother Google about the lakeside village. She informed me that a group of Icelanders, running from famine and volcanic horrors in their home country, settled Gimli in the latter quarter of the nineteenth century. The community, with a small population of only around 2300 today, maintains a fierce pride in its Icelandic heritage, even hosting an annual Icelandic Festival in late summer. Well, at any rate I was wondering why I felt a connection with Gimli, Manitoba and why, suddenly, I sensed a connection with Iceland. The answer came as quickly as the question. I felt a surge of memories erupt in my brain, a torrent that took me back to Kolbjørn’s last departure from the coast of Norway on his barnacle-crusted fishing boat. He left the village of Bremanger, intending to fill the holds of his boat with a catch of fresh herring. But a series of fierce storms commandeered his vessel, their odd west-bound winds taking him 2000 km to the shores of Iceland. There, he found famine, fear, a monstrous volcanic disaster in the form of a volcano called Askja, and a cadre of Icelanders determined to flee the horrors of 1875 Iceland. They made their way to Canada, and then across land to Manitoba, where they settled on the shores of Lake Winnipeg, where they built an Icelandic community. Though he was a proud Norwegian, Kolbjørn was among those settlers whose homage to Iceland led to the creation of an Icelandic village in Canada, the country hosting the world’s largest Icelandic community outside of Iceland.

The Icelandic connection to North America is far older, though. The Icelandic Askja diaspora of 1875 came more than 800 years after the first Icelandic Norsemen ventured onto the edges of the continent somewhere a few years either side of 1005. Snorri Thorfinnsson is said to have been the first non-indigenous child born in what is now North America, probably at L’Anse aux Meadows in what is present day Newfoundland. But I have no direct link to Snorri, nor to Snorri’s birthplace, so you’ve caught me going off on a tangent. I came here to talk about Kolbjørn Landvik, Norway, and our joint Icelandic connection.

If you question the validity of anything I’ve told you here, I encourage you to look up Gimli or Snorri Thorfinnsson or L’Anse aux Meadows. You need not look up Kolbjørn Landvik, though, for I’ve scrubbed the internet of his existence, save for a few snippets I’ve written about him, some of which I may have stolen to write what I’ve written here.

I deviated from my intended path, so I now must return to a cup of hot coffee and meditate on the matter for a while. I promise to return, one day, to Kolbjørn and  Gimli and the manner in which my own affinity for things Norwegian and, indeed, Scandinavian in general, arose from ingesting, quite by chance, ancient Norwegian DNA. I’ll tell you stories about what life was like for Kolbjørn Landvik while he was growing up and how, over the years, he came to be a fisherman and a father and a widower and a grandfather and a recluse and a very good man who did very bad things.

 

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Cancer Journal 5, 2019

Posted on January 8, 2019 by John Swinburn

Yesterday’s treatment regimen began with radiation therapy at 10:30 a.m., my third session. As I waited to be called in for the session, a guy came into the waiting room and sat down near me. He introduced himself as Terry (I think…that’s what I’ll call him) and told me he was being treated for throat cancer. He’s a farmer from Dumas Arkansas who, if his circle of friends is any indication of his financial state, is doing reasonably well. He said a good friend from high school, who lives in Houston, is a well-to-do lawyer who has a “extra” house in Houston and who owns a plane. The guy offered Terry a place to stay in Houston and round-trip transportation from Arkansas to Houston if Terry would agree to treatment at M.D. Anderson. Terry’s sister is a nurse at UAMS and she insisted he be treated in Little Rock by the cancer specialists there. Terry said he once owned a house in Hot Springs and spent racing season here, regularly going to the race track and betting on horses with a group of well-off friends who frequently ate at Oak Lawn restaurants and drank top shelf liquor. He stopped going to the races when he stopped drinking alcohol about three years ago. Terry felt like he was getting advice from too many sources. He went out to his hunting blind and sat and thought. He decided to stick with getting his treatment done in Hot Springs.

Terry blamed his throat cancer on a combination of things, include his smoking (he just stopped) and all the chemicals he has to use on his farm (I didn’t ask him what he produced). “Hell, I used 800 gallons of Round-Up just last year. I’m breathing in the fumes from the tractors and the mist of the chemicals. It’s no wonder I’ve got this bullshit.” Terry said cancer is epidemic in and around southeast Arkansas where farming requires enormous volumes of chemicals to generate sufficient crops to make a living. I got the impression that Terry would have rather avoid the chemicals but he couldn’t produce enough to make a living without them.

And then Terry was called in to the treatment room next to mine. He doesn’t know much about me, other than I am being treated for lung cancer and I’m a willing listener.

My treatment was, as promised, quick. From the time I was called in, right on time, until the time I was ready to leave was fifteen or sixteen minutes. And that included a minute or two for one of the techs, Dan, to add touch-up paint to a red cross on my chest. The paint, or whatever it is, has a distinct, pungent odor like a combination of oil and melted crayon (I should say the odor reminds me of melted crayon, as I imagined melted crayon would smell). I think the cross is a target for Dan and his partner to use in aiming the radiation beams.

I allow myself forty-five minutes just to get there from home. I’m tempted to rent an apartment for five days a week. No really. But, maybe.

From my radiation therapy, my wife (who had been waiting patiently in the lobby) trekked to the other side of the building for my first chemo treatment. I was called back and weighed, then taken to an examination room. A few minutes later, Dr. Chen came in, asked a few perfunctory questions, and led us back to the chemo infusion room. The room is filled with chrome-plated metal framed recliners, topped with blue plastic built-in cushions. I was told to take any open spot, which I did. A nice guy named Bob, who I presume worked there, offered me snacks and soft drinks and a blanket, etc. He asked about my cancer. I told him. He said he had lung cancer eight years go. His upper left lobe was removed. He feels fine now. He was given Alimpta, which he said was new then, and a carboplatin. I settled in to my recliner.

A while later, my assigned nurse/tech came over and attempted to insert an access needle into my newly-installed chemo port. Apparently, the needle was too short. Another tech offered advice (“a number 1) and access was granted! The process took longer than I expected, just to get the killer-chemicals dripping. First, for about 20 minutes, a drip bag of anti-nausea drugs was placed on the pole next to my recliner and dripped into me. Then, some other “pre-treatment” drugs were dripped in. Several bags of who-knows-what…she told me, but it didn’t register…were dripped in. Each time a bag emptied, the device from which the drip bags were hung on the pole beeped to alert staff to make a change.

When, finally, the chemo treatment was finished, the tech attached a Neulasta on-body-injection device on my upper left arm. Neulasta is a drug that helps boost the white blood count to reduce the risk of infection. The device attached to my arm was programmed to give me an automatic injection of the drug about 27 hours after the conclusion of my chemo treatment.

What I did not know about the device and the drug until I got home and read the literature is a little disturbing. For example:

  • I should not be exposed to X-rays, MRI CT scan, etc.
  • I should not drive between 26 and 29 hours after installation of the device;
  • A caregiver should be present to monitor whether the device is leaking and take appropriate action;
  • If there is evidence of allergic reaction, the caregiver is to contact the healthcare provide immediately and/or seek emergency treatment;
  • etc.

I called about the X-rays, etc. The tech said not to worry, just tell them I have a Neulasta device. What about me driving, etc., I asked? No, you should have someone monitor you and you shouldn’t travel during the “active” time for the device.

I then contacted a friend who had offered to give me a ride for my morning treatment, (before I read about some of the more intrusive and demanding aspects of the device), to let her know that the time had changed and to inquire as to whether she could still do it. She could, but would prefer I accept another person’s offer for a ride; but she would do it if that fell through.

The schedule of my radiation treatment coincides with the beginning of the “monitoring” period for the device. So, I shouldn’t be driving or traveling and should have a caregiver present to do all these caregiver deeds…all the while hanging around a parking lot in Hot Springs, I suppose, until the danger is passed.

The more I read about the constraints, the more I decided I could not ask anyone to take it upon themselves to do what was required, even though the offer was serious and I’m sure the time and energy would have been given freely if the schedule worked…monitor leakage of the device, take appropriate action, rush me to ER, etc. etc. if things went haywire.

So, this morning I called the radiation folks to try to get an early-in-the-day appointment or to skip today’s treatment. No, no, no. We’ll talk with the techs and the doctor and get back to you. We do not want you to skip a treatment.

The call came back. Go to radiation treatment. You can drive home. We’ve never had any issues with Neulasta. And, so, I will do as the healthcare experts say.  I should be home by the time the injection begins, anyway, so my wife should be able to monitor the device and follow directions on the paperwork if anything looks amiss.

 

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