Cancer Journal 14, 2019

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

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

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

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

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

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 that 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

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

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

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

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

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

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

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

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

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

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

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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Forgiveness, Gratitude, and Regret

Forgiveness does not excuse a person from having done wrong, nor is it a gift of redemption one gives to someone else. Forgiveness is not extended to another person for the other person’s benefit. It is a gift to oneself to achieve a measure of peace. That’s a lesson I’ve taken the better part of sixty-five years to learn. And I’m still learning it, still trying to internalize it so it becomes second  nature. Though not truly a resolution, I decided a few days ago that I would begin 2019 by forgiving all the wrongs, real or imagined, done to me or to my sensibilities. That includes forgiving even myself for what I’ve done to myself and to others. I can’t “fix” all the damage, but I can make an effort to avoid creating more. At the moment, perhaps one of the most difficult things I’m finding to forgive is what I did to myself and to my wife by smoking for so many years. All I can do is to my damnedest to overcome the consequences. And I can be grateful I stopped smoking when I did; things could have been worse. Interesting, forgiveness and gratitude seem intertwined for some reason. I see that as a positive. But with forgiveness, especially forgiveness extended to oneself, there’s another sense that’s extremely hard to overcome and that interferes with forgiveness. That sense is regret. I regret having been a smoker. And the harm caused by smoking is hard to forgive. Yet the fact that there’s nothing I can do to change the past, and the need to achieve some measure of peace in spite of it, leaves me no choice but to try to forgive myself. The reality is that I can’t “unsmoke” all those cigarettes I smoked, so I can’t “make it right.” The alternative to forgiving myself and to letting the regret slip away is to permit myself to suffer for past mistakes that I’ve long since corrected. If I hadn’t corrected them, the story might be different. But I did. So…so…so what? Perhaps the lesson is that regret is impossible to dissolve with forgiveness, but it can be minimized by paying a price. And that price is forgiveness.

The next lesson, perhaps, is how can one be forgiven by others? The answer is straightforward. One can be forgiven by others only when they are ready to give themselves that gift. I think I’m writing in circles. I know I’m thinking in circles. I sound like I’m thinking in clichés. But these subjects and the aphorisms that arise around them (and cling to them like barnacles to a sunken ship’s hull, to use an odd, out of place simile) intrigue me and help shape the way I think.

When I think of the things I’ve regretted doing, or not doing, I realize I’ve created a very, very long list over the course of my sixty-five years. The process of minimizing the sense of regret for all those acts and omissions will involve enormous volumes of self-forgiveness, the capacity for which I seriously doubt I have. I suppose a place to start may be with the “big” things, the stuff that caused the most hurt. Even the formidable task of whittling the list down in such a way overwhelms me. From what I’ve written, one might get the idea that I feel like I’m a pretty miserable human being, having done so much harm and having so much to regret; yes and no. I don’t feel that I’ve engaged in significantly more or less hurtful acts or omissions than the average person, but I think I may tend to be more conscious of them. Or maybe not. I don’t know what other people think. I only know I don’t see as much evidence of regret in others as I feel in myself. Others may feel the same. But I have, for much of my life, tended to document (not necessarily publicly) things I’ve done or said about which I regret. I haven’t seen so much in others. Yet they, too, simply may not share their most private thoughts with the world at large. Reading my blog, one might assume I share ALL of mine; I don’t.

 

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Cancer Journal 4, 2019

This morning, we drove through pea-soup fog and darkness to the radiation therapy center, arriving just about the time the clean-up crew arrived. I much prefer to be half an hour early than 5 minutes late. Right on time at 7:15, the guys who do the work with the machinery and otherwise handle the radiation treatment invited me in to the treatment room. And, fifteen minutes later, the treatment was finished. Amazing!

We crossed the parking lot to the CHI St. Vincent Outpatient center and I checked in, an hour earlier than my 8:30 appointment time for day surgery to get a chemo port installed in my chest. Around 8:00 a.m., I was called in for a blood draw, which was accomplished by painfully stabbing me in the right arm, despite the process beginning with a painful stab in my left arm. I prefer pain-free single-stab blood draws. As I returned to the waiting area, my wife and I were asked to follow a young man into a “procedures” room, where he handed me a gown and a clothes bag and gave me instructions to remove everything and put it in the bag and put the gown on with the open end in back. He then left.

Before I could begin to do as he bid, a woman knocked and entered. She was carrying all manner of “stuff,” including three sealed bags in which antiseptic-soaked cloths awaited; she instructed me to use the three cloths as follows: wipe all over my front and back from my pants line to my neck with one cloth; wipe my arms with another cloth; and wipe my legs with the third. “Don’t wipe in on your hooha; it’ll burn,” she said. She also handed me a little sealed bottle that I learned later was full of orange antiseptic, along with a sealed plastic bag which held three q-tips. I was to dip one in the bottle and swipe it around the inside of one nostril, do the same with a second, and “dry” the nostrils with the third. Finally, she handed me a plastic-sealed toothbrush and a sealed bottle of liquid into which I was to dip the toothbrush, then brush my teeth and spit out the liquid. “Don’t swallow any.” After I finished all of that, she aid, I should put on the gown.

The woman then left and I did mostly as instructed, screwing up the “use one q-tip per nostril” part. About the time I finished, she returned, along with a nurse, and the two of them prepared me for the procedure. The nurse put an IV in my arm (no pain) and asked me a long list of medical questions. The tech did an EKG, put “leggings” around my calves to protect against blood clots, and gave me blankets. Finally, after about 20 minutes, they left (but not before an anesthesiologist came in, asked a few questions, and checked me over). And we waited. And waited. And waited. And waited. After well over an hour, I needed to pee. My wife went out looking for someone to help. Someone gave her a urinal. That worked. Finally, the doctor came in. He had lots of wrong information in his head about me. He thought my condition involved kidney cancer. He thought my doctor was someone I’d never heard of. Finally, he got it all straight. He assured me that the procedure would go well. Only 1 in 1000 of his patients had problems like a collapsed left lung. I did not inquire if I was patient number 999.

Not long thereafter, a different (much younger) anesthesiologist and a woman named Dallas came in and whisked me away to the operating room. The anesthesiologist told me I might feel a stinging in my arm when the sedation medication entered. I did. He said I might feel a stronger sting when the next medication entered. I did. Apparently, though, it knocked me out very shortly thereafter. The next thing I remembered was opening my eyes in the recovery room, coughing fitfully. A woman sat next to me and asked how I was doing. I told her I was reading a book called Cutting Remarks by a retired surgeon and that it was fascinating and absolutely riveting. Finally, they wheeled me in to another tiny private room and then ushered my wife in. We chatted off and on for 30 minutes until they told me I could get dressed and go home.

When we left the hospital, we drove across the street to Longhorn Steakhouse (I think), where we had lunch, then came home.

I was expecting very minor tenderness (because that’s what I was somehow led to believe I would experience) after the surgery. It is considerably more than mild tenderness. It is extreme discomfort. I’m typing this as I grit my teeth and wish I had some powerful pain killers. Actually, I guess I would rather not take them. I’ve already canceled my participation in tomorrow morning’s planning committee at UUVC and I’ve once again asked our friends to allow us to postpone the dinner we were planning for tomorrow night. I hope the tenderness/pain diminishes quickly and completely. I tell people I have an allergy to pain. I hope, especially, that by the time I go in for my Monday morning radiation treatment, the pain has subsided enough to make holding my arms in the required position on the table is not agonizing.

And, my friend Linda offered to drive me to the Tuesday appointment! If the tenderness hasn’t dissipated by then, I will take her up on it. I am so fortunate to have friends like her and the many others who have offered to do things for us.

 

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Cancer Journal 3, 2019

This afternoon, my wife and I drove to the oncology clinic, where I was scheduled to have a blood draw. The moment I walked in, one of the staff members told me she had just spoken to a doctor’s office about day surgery to install a chemo port and that I should expect to hear shortly and that it should be scheduled tomorrow. Before I was called in for the blood draw, I got the call and arrange for the port installation. I am to be at the hospital at 8:30 and should be done just a few hours later. I will need a driver, I was told, because I’ll be anesthetized. After I got to the radiation facility just up the hall, I spoke to a tech to make sure there would be no “issues” with me getting radiation after my chemo port implant.

No…but. The but was that I might be in pain on the radiation table because I have to hold my hands over my head; it would be better if I were to get the radiation session done before the surgery. Thanks to a couple of techs who were willing to help me out, I’m going in for my radiation session at 7:15 a.m. and will be finished in time to have my port installed. And I should be home sometime by 2 or so, I was told (after the port installation, I’ll have to stay in “recovery” for a good while).

We had just invited friends over for dinner tomorrow evening, but because I had planned to cook and I suspect I may be either worn out or zonked, we’ve asked for their forgiveness and are trying to reschedule. And I told another friend, who was to come visit me tomorrow and bring me a gift, that I’ll have to delay that, as well.

I had hoped to leave the radiation session today with a firm calendar of times for future sessions. I didn’t. I got tomorrow’s and Monday’s. Their schedule is so frenetic that it may be late next week before I know anything firm for the future. In the interim, it’s going to be off the cuff.

While I was waiting for my treatment today, I chatted with the radiation oncologist who’s in charge of my treatment. He suggested that he’s virtually certain that radiation will eliminate what he said were probably “just microscopic bits of cancerous tissue that were on the wrong side of the surgeon’s (some kind of device that cuts and staples simultaneously).” That gave me a bit of a boost. But I’m still not looking forward to this battle with those microscopic bits.

Monday, I’ll see the oncologist and ask a series of questions.

I can see how the amount of time I’ll spend seeing doctors and technicians will be more than significant during the next few months. And I can tell it won’t be subject to smooth scheduling. I’ll just have to cope. And I hope family and friends will be patient, not just with me but with the demands I place on them and their time. The strain is already beginning. My wife has an event she wants very much to attend on Tuesday, but it may be conflict with my radiation session schedule (when I get it nailed). I told her I can drive myself. But because it’s the day after my first chemo treatment, she’s worried that I shouldn’t. I’ll have to gently insist that I will drive myself and that she should attend her event.  Little things. Little things.

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When Things Fall Apart

Years ago, when I stilled lived in Dallas, I bought a book by Pema Chödrön, an American Tibetan Buddhist monk. A guy I had worked with years before recommended it to me during a phone conversation I initiated to reconnect with him. It took some detective work to track the guy down, but I finally did and I enjoyed the talk. I’ve not spoken to him since and, again, I’ve lost touch with him. And I’ve never finished reading the book he recommended. But I think I still have it on a shelf somewhere. The reason this is on my mind this morning is that I got one of my periodic “push” alerts from Maria Popova and her Brain Pickings newsletter this morning. This issue focused on Chödrön’s book entitled, When Things Fall Apart: Heart Advice for Difficult Times. Several quotes Popova selected from the book struck me:

Without giving up hope — that there’s somewhere better to be, that there’s someone better to be — we will never relax with where we are or who we are.

“Giving up hope.” Chödrön’s twist on the phrase, coupled with some of her other insights, puts the experience of living life in an entirely different light.  Popova goes on by continuing to quote from the book:

Life is a good teacher and a good friend. Things are always in transition, if we could only realize it. Nothing ever sums itself up in the way that we like to dream about. The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit. It’s a very tender, nonaggressive, open-ended state of affairs.

And later:

What makes maitri [the Buddhist practice of loving-kindness toward oneself] such a different approach is that we are not trying to solve a problem. We are not striving to make pain go away or to become a better person. In fact, we are giving up control altogether and letting concepts and ideals fall apart. This starts with realizing that whatever occurs is neither the beginning nor the end. It is just the same kind of normal human experience that’s been happening to everyday people from the beginning of time. Thoughts, emotions, moods, and memories come and they go, and basic nowness is always here.

Some of these concepts are incredibly easy to grasp, some not so simple. But they seem extremely relevant to me this morning, as I attempt to find that proper, comfortable path between fighting against pain and disease and fear and anger, on the one hand, and accepting all of them, on the other. My pain and my disease and my fear and my anger are not unique to me. In fact, they are as common as leaves on trees. Yet I strive to find ways of coping with these utterly natural phenomena.

Chödrön’s perspectives encourage me to explore other ways of looking at the experience of pain and darkness and the absence of knowledge; and other ways of looking at experience itself. For example:

When inspiration has become hidden, when we feel ready to give up, this is the time when healing can be found in the tenderness of pain itself… In the midst of loneliness, in the midst of fear, in the middle of feeling misunderstood and rejected is the heartbeat of all things.

Suffering begins to dissolve when we can question the belief or the hope that there’s anywhere to hide.

I have never contributed, financially, to Brain Pickings. Judging from the value I find in Popova’s selection of topics and the way she explores them, I owe it to her and to myself to contribute. And I will.

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Cancer Journal 2, 2019

I noticed today that the pain in my back and chest seems to take on difference characteristics from time to time. I don’t know whether that has to do with time of day or amount of activity I’m involved in (which is never much) or something else. I’m not quite sure who I should ask about the pain, either. I’m relatively certain it’s related to the lobectomy, so the surgeon might be the one to contact. But his involvement is essentially over, save for one follow-up visit that’s scheduled for June. So maybe it’s the oncologist. She’s a good first stop. But, as I may have written in a post within the last month or so, I’m not finding it terribly easy to communicate with her. (The constant busy signal when I try to call her office is not the reason for that, but it’s an extremely annoying experience when I want to ask a question or set up an appointment.)

My friend Bev suggested that I seek out others who have gone/are going through what I’m dealing with. Her husband, while he was battling the cancer that eventually took his life, had a “cancer buddy” that shared many of the same cancer attributes. I will follow her advice. There must be support groups locally for lung cancer patients. I’ll seek them out.

My post yesterday, in which I ranted about about the reality that cancer is trying to kill me and I’m trying to kill it, was an emotional firestorm. I am trying to put the flammables out of reach and douse the sources of ignition. Good luck with that, John.

Tomorrow I go in for blood work and my first radiation treatment. After tomorrow, only 29 more doses of radiation and I’ll be finished! (Unless the doctor decides more is needed.)

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Lessons

Acknowledging one’s flaws is a necessary step in erasing or overcoming them. But giving them too much attention is like fertilizing noxious weeds. I’ll try treating mine as lessons instead of gardens.

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Panic, Perhaps?

I think, for the first time since I got the diagnosis of lung cancer, the realization has finally hit me that I’m in a fight for my life. Maybe I’ve come to that realization before, but I’ve blocked it. Maybe I’ve been too afraid to allow myself to remember the realization. Maybe I can’t allow myself to acknowledge it for long. But I realize it now. The disease is attempting to kill me and I am relying on doctors and other medical professionals to administer drugs and other treatments to kill it first. I am a player in this game, of course, but in many respects I’m simply a pawn. I don’t know enough to know what to do, other than follow instructions and listen to and heed advice. But I’m fighting, albeit without knowing exactly what moves to make and what to do to give myself the advantage.

I have the distinct impression that no one wants to have a conversation with me in which the possibility that cancer might win the battle is open for discussion. Everyone, me included, wants to believe “you’ll fight this thing and you’ll win.” But not everyone wins. And sometimes the treatments are so goddamned ugly that the victims of the disease wonder whether the disease or the attempted “cures” are the uglier options. I have no evidence of what I’m about to write other than a gut feel: people want to say they will do what they can and they mean what they say, but when push comes to shove, they want to avoid being too closely connected to someone with the disease. That’s not true, I think, of people like spouses or others with whom one has a very close relationship on a daily basis. But others who want to be helpful would rather not be asked. And so they don’t want to have conversations about “what if” treatments don’t work. They don’t want to be too close to the possibility that, instead of recovery, I might face some form of wasting away in pain, whether quickly or over a long period of time. Hell, I don’t want to face that, either. But I have little choice, unless I simply ignore reality and pretend my chemotherapy and radiation treatments are like visits to the dentist.

There’s a fine line between coming to grips with a potential death sentence and determining with every ounce of one’s resolve that the sentence will not be carried out. Tonight, as I write this, I am determined to fight until I win. But I have to realize, too, that I’ll pay a price for victory. I may have severe shortness of breath. I may suffer from none or many of the potential side effects of the treatments, some minor and some catastrophic. Or I may breeze through treatment with no ill effects. But even then it won’t be over. The statistics tell a story of a “post-cancer” life that doesn’t last terribly long. Lung cancer tends to return. Once it finds a victim, it tends to seek out, quietly and undiscovered until too late, waiting weaknesses.

Perhaps the thoughts going through my head tonight are evidence that I am a coward. I haven’t even started treatment yet and here I’m contemplating its ill-effects and ultimate failure. I don’t look forward to radiation therapy five days a week and a twelve-week regimen of chemotherapy. But I don’t know that I’m a coward for dreading it and everything else associated with the disease. As I look back on what I’ve written, I think “coward” isn’t the appropriate moniker for me; no, maybe “psychotic” fits better. I bounce between cheer and dread, sometimes in the same effing sentence.

Back to where I started this diatribe. I wish I had someone willing to listen to my rants without feeling an obligation to answer them, point-by-point. Someone who’s been there, perhaps, someone who knows what comes next on my emotional trip across the galaxy. I’m deeply grateful for my friend Bev, who’s been there with her husband’s illness, and has shared advice and counsel. And I’m so very grateful for my Facebook group, whose members have allowed me to whine and rant and express my raw emotions. But I think I need someone else, someone not invested in my happiness or sanity, to listen and offer blunt advice. I want to be able to talk to someone who can offer counsel on my options if things go awry; how can I bring the process to a close with the greatest certainty of success and with the least emotional damage to those I love? I realize these decisions are a long way from today; but I want to know well in advance how I cope with such things.

In the interest of full disclosure, the mood that prompted me to write this screed might be attributed to the wine I’ve had to drink tonight. Maybe tomorrow morning I’ll have forgotten all this. Probably not, though; there wasn’t that much wine. Am I simply experiencing some form of panic in advance of the commencement of my radiation treatments in a couple of days? Or is this emotional bowl of spaghetti a moderately normal reaction to a cancer diagnosis? I cannot believe I’m still so damn emotionally charged weeks and weeks and weeks after getting the diagnosis. It’s embarrassing to be such a baby. Maybe that’s not right. Not a baby, but a crybaby. I’ve had ample time to get used to the reality of my diagnosis. Yet I’m whimpering about it. I am too effing weak to fight cancer on my own; I need help doing it. And before anyone offers to refute that, please don’t. Please just let me feel what I feel. I don’t mean to be offensive, but I think I need to just experience my emotions and let them flood over me without anyone trying, with the best and most admirable motives, to assuage them.

If you’ve read this far, thank you. I’m sorry to have put you through it. But it was cathartic for me, I think. If I’ve already written all this, forgive me; I’ll blame the wine for that.

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Cancer Journal 1, 2019

For the last two days, I’ve felt better. My surgical pain, though decidedly still with me, has been tolerable. I’ve not taken any oxycodone for pain in quite a few days, but I’ve increased my gabapentin by about a third in recent days; I suspect that may have helped.

My oncologist told me she was going to have a surgeon contact me about installing a port in my chest to simplify the process of chemotherapy and drawing blood. But that hasn’t happened yet, so I’ll call her today to find out what gives. My first chemo treatment is scheduled for next Monday, January 7; I doubt I can have a port done this week, so it may be a while.

My first “real” treatment will be Thursday afternoon, when I get my first radiation treatment. I hope to learn then the schedule for treatments (and I hope they’re in the morning from that point forward).

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