John Swinburn

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.

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.

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.)

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.

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).

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.