John Swinburn

Yesterday was a miserable day. I wasn’t able to sleep the night before, due both to simple discomfort and distractions and to pain. Yesterday, I tried to sleep during the day with little success. I couldn’t get warm, no matter how many covers I pulled over my body; I felt like I was destined to be cold no matter what I tried. Even sitting in front of the fire place was futile. I felt sufficiently miserable that I began thinking of whether I could long continue to tolerate the roller-coaster and how I might make it stop. Anything would be better than constant pain and fatigue and shortness of breath.

One day, I feel pretty good, the next I am in constant pain and have absolutely no stamina. The lack of stamina is pretty constant, whether or not I’m in pain.

Yesterday, in the midst of anguish and despair, I felt a sense of hopelessness like nothing I’ve ever felt. I felt like I was becoming an albatross around my wife’s neck. If this was the best I could expect, what would life be like for her if it gets worse for me? I can’t begin to adequately describe the depths of my thinking. I contemplated the possibility of just getting in my car and driving away. Far, far away to a place where I could just disappear. I’ve not felt a sense of despondency like that since periods of deep ennui when I was in college, alone and in emotional pain and willingly contemplating the possibility of buying or stealing enough pills to enable me to end it.

Today is better. I’m not planning any celebrations, but today is much, much better. Yesterday, during the worst of it, we decided we should cancel New Year’s dinner with a couple who had invited us to join them. And I opted to plan to stay home from the musical program at church today. I simply couldn’t imagine trying to get up and get dressed and attempt to enjoy music and photographic art (which was the plan). So I decided to stay home. My wife had invited our friends next door, thinking they would enjoy the program, and they accepted; she left a while ago.

I really don’t understand why my mind (and my body) is taking me on such a grotesquely painful journey of late. Not long after I got home from my surgery, I felt very much like I was on the mend and I could see a point at which I could look back at my experience as an ugly but survivable detour. That sense seemed to have left me, replaced by a sense that the removal of a lobe of my right lung has irreversibly and permanently altered the course of my life. It probably doesn’t help to do a Google search for “quality of life after lung lobectomy,” and then read in detail (and between the lines) the results. The bottom line of such an endeavor was a sense that much of what’s written suggests a tolerable quality of life after surgery for those unfortunate fifty percent of patients who suffer chronic, lifelong post-surgical pain. That, coupled with the horror stories I’ve heard and read about the after-effects of chemotherapy and radiation, tends to bring me down. (Side note to Bev: I know, Bev, and I am glad you’re there to offer a real-world perspective.)

Today, as I look at and write about my emotional reactions to what I can only surmise is a normal, natural response to my surgery, etc., I can be dispassionate about it all. I can be an uninvolved third party, examining the situation from a distance. My distant assessment is that I have simply allowed my emotions to hijack my experience, replacing analysis with fear and coping with desperation. Today, I can make choices that, yesterday, would have been knee jerk reactions to growing panic. I realize, today, that I’m only a month and a half in and that I need to give myself double that to know the direction of my recovery. And I know I have to factor in the chemo and radiation during that assessment. I read, somewhere recently, that taking experiences, even bad experiences, in short segments makes them more tolerable. I think the writer suggested that, “I can tolerate anything for thirty days…I can decide after thirty days whether the experience is tolerable or whether I must do something to escape it.” Thirty days of pain (though, in my case, it seems like ever other day I’m in pain, so it’s really just fifteen days) should be tolerable.

Yesterday, I should remember, was an especially bad day. The worst so far, I think. Perhaps it was simply a fluke. I realized, late in the day, that I hadn’t taken my vast assortment of medications early in the day. Perhaps that had an effect on me. Maybe yesterday was an aberration that I won’t experience again. When I woke up this morning, I felt so much better than I did at any point yesterday that it was like I was living in a different body. While I’m in pain today, today it’s mostly a low level, almost not noticeable experience. I can live with that. I can get used to it. While I would rather not cope with it, I can cope with it. Yesterday’s pain? I tell myself I can cope with thirty days, like the writer suggested. And I have to remember, too, that I have options. I can ask doctors what other medications or regimens I might pursue.

Today, as I reflect on yesterday and how miserable I was, I have an odd sense that it was, indeed, an aberration. Maybe I’ve crossed a threshold beyond which the pain will be more tolerable and the depression or whatever it is that seemed to have taken over my mind will slip away quietly.  I know one thing with some certainty: constantly focusing on my pain, myself, my experience, my cancer, my prognosis, etc. is by itself a fatigue-inducing exercise. So I must stop. I know I can’t eliminate that train of thought entirely, but I can derail it to an extent that I can explore other things of interest.

One of my interests is (for reasons beyond my understanding) Scandinavian culture. In my fiction, I’ve written about Kolbjørn Landvik and Lina Lindström and Stefan Ruud and others from Norway and Sweden and Denmark, etc. I’ve explored Icelandic history. I’ve dreamed (in writing) about how my affinity for certain foods must be a sign of some odd connection through the dust of the universe I have to long-dead Scandinavians and their gustatory pleasures. I realize, of course, I have absolutely no real world connection to Scandinavia, but I enjoy making up stories that involve leaving the rugged coastline of western Norway in a fishing vessel, destined for experiences that might shape the future of the world. So, if I can keep surgery’s and cancer’s physical and emotional attacks at bay, I shall invest some more of my time in Scandinavian imaginizing (it’s my neologism; leave it alone).

I like to write. I think I have something to say (though just what remains to be seen). I feel a need to empty the contents of my overstuffed imagination into a container the size of the universe, climbing inside and retrieving bits and pieces and cobbling them into stories. I hope I haven’t lost my ability, through my months-long focus on writing about surgery and cancer and pain, to write interesting fiction. I suppose time and productivity or the lack thereof will tell. I feel I’m attempting to crawl out from under self-imposed emotional baggage. Today, I think I have the energy to do it.

My blog, once a repository for creative ideas I wanted to save from the ravages of time, seems to have become a repository for experiences I would rather have avoided. Instead of letting my blog serve as the moderately willing audience for my fantasia, I’ve forced it into another role entirely; it has become the unwilling audience for my slow-motion, stumble-by-stumble decline into ruin. I’ve successfully restricted, for a couple of weeks, the volume of posts that delve into my emotional response to my lung cancer diagnosis. I explained that the pause in my posts was a response to the physical pain of sitting at my computer, typing. And that was true to an extent. The more complete explanation would have assigned more responsibility to the emotional pain that I tried and failed to muffle as I wrote about my experiences. There’s something decidedly unmasculine about admitting to, much less talking or writing about, emotional pain. Despite my anger that such a social/societal restraint exists (and I’ll go on record that I find the imposition of such social restraints fundamentally cruel and wrong), I opted to stop writing for a while, rather than risk revealing even more cracks in my emotional armor. That is, I succumbed to weakness and fear. But I discovered during my hiatus in posting here (though I did continue to write, though not much about cancer) some evidence that cracks in one’s emotional armor can be used by some people as targets for their pry bars; emotional “weakness” is like a magnet for the intrusive tools of the person who pretends to care but who, instead, simply craves life in a soap opera to the real world. More on that later.

This post was intended to “make up” for the lack of updates since my last post almost two week ago. I’ve let it slide, as I am wont to do, into territory unrelated to its trigger. So, back to where I intended it to go.

When my surgeon and my oncologist told me the results of the lab pathology tests revealed that excising my tumor did not excise all of the cancer, I was surprised and unhappy. But I got over it, I thought. I would just need to add radiation therapy to the treatment regimen. That’s all.

Yesterday, I visited the radiation oncologist. He reviewed my medical records and told me he had spoken to my surgeon. The results clearly indicated a need for radiation. What surprised me was the fact that radiation would not be a ‘minor’ as I expected. Instead, I will need to have thirty (30) sessions, five days a week for six weeks.  They will begin just a few days in advance of my chemotherapy and will continue daily (weekdays) until February 13. He made a point that I could drive myself to and from the radiation therapy. Except that, when I’m in the midst of chemotherapy and physically drained, I will need my wife to drive me to and from those sessions. According to my calendar, my chemo sessions will be January 7, January 28, February 18, and March 11. I haven’t driven since November 19, the morning of my surgery. I drove from the motel where we stayed the night before to the hospital, where we had to show up at 5:00 a.m. Wow. A month without getting behind the wheel. That must be a record.

As I look at my calendar—at how damn much of 2019 will be devoted to dealing with cancer—I just don’t know whether I want to put myself and my wife through it.  My wife suggested yesterday that we might ask people who have offered to help to follow through with their offers. She doesn’t have any more interest than I in giving over her life to an endeavor that may or may not give the results we want. She, though, tends to believe all the offers of help. I know some people whose offers are absolutely dependable. But I’ve learned during the course of my experiences so far that some people wag their tongues as a means of gathering accolades for selflessness that doesn’t exist. “I wanted to call/come see you but didn’t want to bother you” or “I wanted to spend some time with you but my calendar is crazy-full.”  Uh-huh. As if email, being a twentieth century technology, no longer exists and texts are not dependable because…uh…who knows. I find it hard to be civil to those people. And not because they are treating me like I’m stupid enough to believe their artificial empathy but because I know they must have treated others the same way and the others may not so readily let lies run off their backs like water on a duck. But I guess the fact that I recognize those people for what they are makes me more likely to be cynical about people I don’t know as well. Are those other folks who seemed to want to help really genuine in their offers or are they just attempting to paint over the flaws in their compassion with a magician’s magic?  On the other hand, people who are not particularly close to us and who share virtually no attitudes with us socially, politically, religiously, intellectually, etc., stopped by with food and an offer to take us grocery shopping or to chemo treatments, etc. These are people we consider distant acquaintances. But those good people, as much as I appreciate them, don’t erase the disdain I have for the others.

Yet, while I find those make-believe missionaries of good will patently offensive, there are others whose offers are as good as gold. There are the people who show up on our doorstep with food so we don’t have to worry about making a meal after visits with doctors. I can only begin to count the number of bowls of chile and soup our friends and neighbors have given us. And people have stopped by with casseroles. And they’ve brought pumpkin bread and garlic toast. Without fail, these same people have offered to go to the grocery store for us or give me a ride to the doctor or do any number of other errands for us. Those are the people I believe; they are the ones I would feel comfortable asking for rides to town for radiation treatments. But, then, they are the ones who have already done more than we have any right to expect. And there’s Maddie, who moved away some time ago but whose kindness and decency remained; she reads my blog responds, usually, directly via email. Good people the world over deserve a friend like her.

The worst of the surgery pain is behind me, I think.  I still have considerable pain, especially after riding in the car for a while…hurts like hell with every bump…but I can get through the night without getting up to take painkillers now. But I’m still much more tired than I want to be. And I tired quickly. And I wheeze when I mean to breathe. And I walk so slowly that I’ve come to realize what a bastard I’ve been when stuck behind someone who walks very, very, very slowly through a grocery store.  Just when the worst of the post-surgical pain dissipates, the pains associated with chemo and radiation therapy will begin. My wife suggested I get my head shaved before my first chemo appointment. I didn’t think that would bother me (I’ve often talked about getting my hair cut extremely short) but for some reason the idea of shaving me head in preparation of going in for chemo treatment derails me, emotionally, for a few minutes every time I think about it.

I said I’ve written a bit unrelated (mostly) to my cancer in the past few weeks. And I have. One day, I might finished some of these posts: Tincture of Coconut; Last Lungs; Misdeeds Goes to Washington; Crush; On Coincidence; My Blame; The Grim Season; Christmas Largess; Barrier; and In the Flesh Bloggers. The last one, In the Flesh Bloggers, was prompted by the members of a Facebook group of bloggers to which I belong. This group of people have allowed me to wallow in self-pity without being judgmental; I appreciate them more than I can adequately express. They are among the folks who, if they were closer in proximity, I think would give me rides to radiation treatments or being me food. We should all be as compassionate and caring as they are; they have the credentials for admission to the human race. That’s high praise, coming from me.

I don’t know just what I’ve written here. Like most of my posts, it has scurried through rabbit warrens and exited through lions’  dens, running from something that’s chasing me or toward something I want to catch. For some reason, this morning is hard. Maybe it’s that yesterday’s visit to the radiation oncologist surprised me with its thirty-session program of treatment. Maybe I’ve kept stuff bottled up without unloading here for too long. Or maybe I’m just melting down for no apparent reason, as usual, and it will pass.

It might have been better if I’d let this post join the drafts that haven’t seen the light of day. But I think not. I think I need to sometimes reveal the madness beneath my serenity (that’s a joke…I have no serenity) just to prove it’s me writing this blog.

I haven’t posted much of late about my experiences learning about and responding to cancer. The primary reason for the drop in output is the decline in my certainty about what I’m dealing with. The certainty…uncertainty…certainty…uncertainty cycles have been torturing my sense of confidence that I know what the hell going on with my body.

Initially, I was sure the problem was relatively minor. I decided it deserved little in the way of detailed explanations. And I was confident my cancer was far less serious than the cancer the majority of people experience. And, then, over the course of several days, I came to realize mine was more serious than I thought. Again, though, I convinced myself it was serious, but not too serious. After my surgery, my surgeon’s quick comment (that all the margins were clear and there were no obvious signs the cancer has spread) was reason to celebrate. A couple of days ago, though, my cause for celebration declined somewhat. My oncologist said there was evidence that cancer had invaded the margins in one area. For that reason, she said, she was inclined to think radiation treatment, in addition to chemotherapy, was in order. Chemo was to be primary, but radiation should  be part of the regimen. By the way, she said, the tumor was considerably larger than the PET scan indicated. Instead of 6.5 cm, the tumor was 7.4 cm. That fact, alone, changed the stage classification of the cancer: it is now classified as a Stage IIIa cancer, versus a State IIb cancer. The day after my appointment with the oncologist, I had my follow-up appointment with the surgeon.

Indeed, he said, he has seen no evidence whatsoever of cancer in the margins. But lab analysis indicated there was cancer in the cells between the lower right lobe—the one removed—and the middle right lobe. He explained that the transition areas in my lobes were clear; typically, he said, the tissues in those areas would be somewhat murky and opaque if cancer cells were present. But the lab analysis showed evidence of cancer, even though the tissues in those areas were clear and virtually transparent. He said he felt certain he could go back in and remove any areas in which there might be cancer, but I had already been through major surgery and doing it again was probably not a wise move. And, he said, the felt confident the radiation could quickly eradicate any remaining cancer. He showed me some still images of the devices used to separate the lobes and which were used to “get rid of” the cancer cells. It made perfectly good sense. The bottom line, he said, was this: if the chemo and radiation didn’t get rid of the cancer, he could go back in later and remove it. But doing it now would present a risk, let alone considerable pain again (not that it’s gone yet). So, the good news is still “pretty good,” but not extremely good. And it’s the sort of news that has effectively hit me in jaw like a cast-iron skillet.

As things stand at this moment, I’ll go back to see the oncologist in about two weeks for various tests, etc. Then, two weeks later, I’ll return (appointment scheduled for December 31) for my first chemo treatment. But I’m apt to change that. I leaning toward rescheduling my first chemo treatment for the week after the first of the year.

I asked the surgeon what the chances were that, even after his surgery, there might be cancer in my body (even assuming nothing went awry with the surgery). The rationale for my question: if the chances were slim, I would think additional treatment would be unnecessary. He said the likelihood is almost certain to be 100%. There is some cancer circulating in my bloodstream, he said. I have to kill it or it will kill me. So declining chemo is out of the question at the moment. That would be madness.

I’ve bounced back and forth so much I can’t believe I haven’t short-circuited my brain. My moods have spun from gleeful to terrified to thrilled to frightened and back again, all in the span of fifteen minutes. And I’ve been conscious of the fact that I absolutely had to keep my emotions in check or I would melt down in the exam room and be unable to recover. I wish I could go out for a long, lonely drive…maybe a several-day diversion in a back-woods cabin somewhere my screams would not alert the police. But I can’t even drive for a while, so that’s out of the question.

The surgeon seems pleased with the results, except that he’s very unhappy that he did not see that cancer cells had spread outside the tumor he removed. And he was surprised at how large the tumor was. I remembered what he had said earlier about what he believed was a 6.5 cm tumor; a tumor that large almost always has spread into the lymph nodes and, frequently, beyond. But the lab results from my surgery showed no evidence that cancer had invaded my lymph nodes. So, on the one hand, I’m very happy that “all the evidence” that’s currently available, suggests the cancer has not spread (except maybe to my middle lobe). On the other hand, I am disappointed to have to go through radiation treatment in addition to the chemo. But maybe I should be grateful that I’ve been presented with the opportunity to fight the bastard that invaded my chest and, if I work hard, win the fight. I’m working on developing that sense of gratitude. I know my circumstances could be far worse. My mood, on the other hand, could be far better. Perhaps my most immediate goal should be to improve the stability of that emotional seesaw.

If I were half smart, I’d look at my most recent information update as merely a bump in the road that needs smoothing. The bump may be a what in Mexico is called a tope (speed bump) or it may be a pothole that needs to be filled. Whatever it is, it won’t get fixed if all I do is bitch about it. Corrective action is on the horizon. Now, what, exactly, does it look like?

I am out of the hospital. Apparently, though, the hospital adventure was just the start of a series of experiences designed either as lessons, to make me a better person, or as punishments in response to the kind of person I’ve become over the years. Whatever their genesis, it might be best if I recount the experiences in brief:

1. A lingering cough that led to a diagnosis of lung cancer;
2. the removal of the lower lobe of my right lung followed the diagnosis;
3. during my seven-day hospital stay, the death of our car’s battery, leaving my wife at the mercy of the (thankfully) reliable shuttle service to and from the motel where she stayed during my hospitalization;
4. the stoppage (cloggage? nonfunctionage?) of the toilet in the motel room where my wife was staying; and
5. returning home (after dealing with numbers 1 through 4 above) to a reasonably warm house that cooled considerably when our HVAC system went down due to an electrical issue (fortunately, my wife’s sister allowed us to stay overnight with her last night in her very comfortable guest room).

With good fortune, our HVAC system was to be repaired today between 1 and 3 p.m. and the other trials we have faced are behind us. Well, that’s asking for too much. The HVAC system is not working, if only temporarily; the repairman will return either later today or tomorrow with a new replacement part—but the temporary fix should last the night. If we can just not have any new challenges in the immediate future, that will be a welcome adjustment. I know, I will have to deal with chemotherapy after my surgical wounds heal. And I know, before my wounds heal, I will have to suffer through the pain of recovering from the surgery. Thus far, since my release from the hospital, the pain has been tolerable more so than it has been intolerable. I hope that lasts. The idea of coping—for long—with an intolerable level of pain is absolutely unappealing. I guess I could do it if I had to, but I think I’d rather be sedated for a week. And I would be (some say “could be,” some say “am”) a most difficult person to be around.

The question is this: what the hell did I do to warrant these self-improvement experiences or punishments (depending on your perspective)? I am certain my life and lifestyle both warrant the imposition of considerable quantities of life-lessons, but I believe, as well, that a cancer diagnosis, alone, would have been sufficient to change me. I did not really need the removal of the lower lobe of my right lung (well, I suppose that could be part of the longer process of a cancer diagnosis). But certainly, my wife should not have suffered the inconvenience of a dead car battery as a consequence of my behavior. And she shouldn’t have to deal with a toilet stoppage as part of my rehabilitation. And she shouldn’t have had to deal with an uncooperative HVAC system. I’m not sure I should have had to deal with that; I am certain she shouldn’t!

Of course this entire string of life-changing events/challenges/aggravations/discomforts could be purely coincidental. In fact, I am relatively sure they are. But I’m not absolutely certain. I’m willing to concede that the universe is sufficiently complex that it may be capable of telegraphing a series of messages to me, hoping I give them considerable thought so that the “lessons” find their way to the intended cerebral stations inside my brain so that I finally “get it” with regard to the messages the universe wishes me to understand. Still, I’m skeptical. But that skepticism notwithstanding, an extensive process of self-criticism is in order. I’ll try not to go into too much detail about that process here on the blog, but I will do some self-reflection, though probably not today.

I do engage in self-reflection and assessment on a regular basis, by the way. I ‘m not sure that comes through clearly in what I write, but I pay quite a lot of attention to my behaviors and thoughts and the motivations behind them. But perhaps I should do more. I’ll remain a skeptic, but will do so from within an open-minded framework.

At any rate, my recovery from surgery has begun. Though the surgeon reported no evidence that there was cancer anywhere but the tumor he removed, I haven’t gotten results of lymph node examinations. I may wait to get that information when I have a follow-up appointment in around two weeks. I look forward to getting the physical recovery behind me. The roller-coaster of pain has been tolerable, I suppose, but my threshold of pain tolerance is not high; I want the pain to end quickly and to never again reach the levels it reached post-surgery. Is that too much to ask?

I’ve learned something since the diagnosis of my cancer. Not about me, but about other people who learned of the diagnosis. Even people I have never met face-to-face.  I’ve learned that people within my “sphere” are kind, generous, loving human beings. So many people have offered support. So many have given it, even without realizing they have done so. Just by expressing sympathy, empathy, or a willingness to be available to my wife and me if and when we need them, people have given us support before I even knew I needed it. That’s evidence of innate compassion, I think. This evening, a friend from church will stop by with a chicken pot pie! She must have read my mind. It’s one of my favorite things, but my wife doesn’t/won’t make it (maybe she would if I begged, but I haven’t begged just yet).

And we’ve been offered rides, errands, food…you name it. An electronic friend in Sweden allowed as how she wished she could send me a post-surgery cookie care package.  I wonder if these folks  realize how important their expressions of support and sympathy make? I wonder if they realize how their willingness to interrupt their lives to make a difference in ours improves my perspective on humanity?

I’ve written so little in the past seven or eight days, I still don’t know just where to begin. I guess this post has been the start. I still want to “journal” my experience in the hospital. A number of experiences merit more words from me, I think, but I guess I’m not yet ready to write them. More to follow. Someday.

The first few days after surgery were easily tolerable. The epidural and other pain meds made to easy to believe all was well. Well, the pain was masked. The agony was replaced by strange hallucinations. I spoke to Santa Clause somewhere along the way. Abraham Lincoln learned from me to play Words with Friends; I was his teacher. But I learned an important lesson, too. Online gaming relies heavily on pain-based gamining. The more excruciating the game, the higher the game-creator’s score and the more likely the game will be adopted. I will write more later. This 1-finger story telling in painful. Just what they want.