The Cancer Diaries, part 5

The resilience of the human body is truly amazing. Here I am, three weeks after major surgery, and much of my daily life is back to normal. I can drive, walk the dog, unpack the dishwasher, cook meals, pour the wine, feed the cats, walk upright… a far cry from my crabbed old-man style of a week or two ago.

Not that I am fully recovered. I have several weeks or even months ahead of me for that. My incisions are still tender, in particular the spot where the Hemo-vac tube had been inserted. The main incision from my navel to my pubes remains a bit raw and ugly (to my eyes, but I have no Goth sensibilities, I suppose), and the bruising hadn’t quite gone away. I can’t walk or get up from my chair as quickly as before surgery, but I am still ahead of my post-surgery days. Bending or twisting requires some fore-thought to avoid pain, and if possible the inevitable squirt of urine. Sneezing still makes me leak, too (and hurts the scars). Regardless, I try to get up and move about, walk the dog, go upstairs, do my chores, and get my limited exercise, as often as possible.

Yes, I’m still incontinent, but much, much less than the days immediately following the catheter removal.  My nights are dry, although I get up two or three times to empty my bladder. I graduated from a diaper to a stick-on pad, too. 

Incontinence is humiliating and frustrating. We associate it with either the very young or the very old: infancy or dementia. And maybe extreme drunkenness (although I’ve never been quite that drunk, myself, I’ve known others who have).

For a relatively healthy, normal person to suffer from incontinence can be embarrassing and emotionally stressful. Continence is an early milestone when you start to grow up. It says you have control, you’re a big person now, you gained some independence. You’re on the path to being an adult. And suddenly you’re off it, standing in the drug store aisle trying to decide which sort of pad or diaper you need, while other shoppers mill around you. And it’s not like I can ask for advice from the 17-year-old stock clerk.

Losing that control is a downward slide on the snakes-and-ladders game of life. It means we have lost the control that identified us as adults. There’s little more deflating than thinking you have finally regained control only to stand up and feel the squirt of urine that says you still have a long way to go. A long, slow way because there’s nothing that signals you’ve reached the plateau of control. You just keep exercising and hoping tomorrow it will be okay.

No one wants to talk about it because incontinence isn’t a sexy, fun topic like religion, politics or what’s on Netflix, so you have to figure out how to deal with it by yourself. But when I suddenly leak, especially after I’ve been exercising and think I have gained some control, it’s like a personal failure; my inability to control a basic bodily function that I was able control before age five, but can’t at age seventy.

There’s an inevitable sense of shame. All the intellectualism I muster can’t help that. I can tell myself it’s just temporary, it’s the inevitable result of prostate surgery, it’s something thousands of men go through, that it will get better. It doesn’t make me feel better when I squeeze a drop of urine into my pad (the pad is a constant reminder I have limited independence). It erodes my sense of eudaimonia, as the ancient Greeks called it — that feeling of wellbeing I have tried to cultivate all these many years.

As I wrote in a previous post, there really is no one to talk with about the cancer, the surgery, and the recovery. There isn’t a support group either, at least none locally. Sure, the doctor gives you some basics, but no one at any stage of the process even told me to bring a pad or a diaper to the office when I had my catheter removed. I was fortunate to have had that experience previously, so I knew enough to do that. But there is so much more I had to learn on my own.

Continue reading “The Cancer Diaries, part 5”

Juet’s Journal in Word format

For those readers interested in the voyages of the late-16th-early-17th century adventurer, Henry Hudson, or in the European explorations of North America, I have recently scanned and edited a copy of Juet’s Journal into Word format and placed it online here. Here is my website on Henry Hudson, too. I haven’t done much with it of late, but that may be slowly changing as I find I have more time these days, during my recovery.

The journal documents how Hudson and his crew ‘discovered’ parts of North America and sailed up the river that now bears his name. For Americans, especially those in New York state, this is important history.

I have long wanted to turn the journals of Hudson’s voyages — replicated in Samuel Purchas’ classic 17th-century work, Purchas His Pilgrimes (aka Hakluytus Posthumus, or Purchas his Pilgrimes, Contayning a History of the World, in Sea Voyages, & Lande Travels, by Englishmen and others — the 1625 publication was actually the fourth edition of his work that first came out in 1613 as Purchas His Pilgrimage) — into readable, copyable, modern text.  However, because the original text is not suitable for scanning into OCR form, I tried to manually input it by reading the original and retyping it in Word.

My initial efforts to retype the text from the vintage typography into modern form were slow and frustrating. It’s difficult to read, even with a magnifying glass poring over  the facsimile editions I have. The printer used the “long f” for an “s”, “v” for “u” and “i” for “j” — all of which need to be substituted. Plus he and the authors of the journals used forms of spelling, punctuation, and capitalization far from today’s standards. As much as I wanted to “correct” these for modern usage, I had to try to retain them for authenticity.

Although I put the project aside for the last decade to pursue other interests and ventures, while I was recently perusing my bookshelves for an unrelated title, I came across a reprint of Juet’s Journal of the third (1609) voyage. My interest was again piqued. I have spent several days scanning, editing, formatting this into a text format that can be used easily. This reprint came from the New Jersey Historical Society, published in 1959. As far as I can tell, it was the first and only reprint of Juet’s journal in modern type.

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The Cancer Diaries, Part 4

A home is not a sterile environment. Not mine, anyway. With two cats, a dog, numerous houseplants,  rooms full of books, and my sometimes lackadaisical attitude toward cleaning, our home will never be sterile. Not to mention the microbiome we all carry around with us: 100 trillion microbes live on or in each one of us: only 10% of the cells we carry around are our own. Most of these colonists are benign, but a few species are opportunistic and will invade our territories when they can. Plus there are viruses around and on us, too.

Coming home after surgery with a catheter and fresh incisions meant thinking about infection. In the weeks leading up to surgery, I had been reading a lot about microbiology and the colony creature we call a human being (start with 10% Human, by Alanna Collen if you want to know more). Fascinating, sometimes a bit scary, but also a great incentive to wash your hands a lot — particularly good advice during this pandemic that I hope I remember to carry through afterwards.

Having pets who were used to sleeping on the bed with us made me cautious about my own sleeping arrangements post-surgery. Last thing I wanted was a cat or dog scratching at my night bag, or the catheter tubing. Not to mention the highway for their bacteria the catheter would be. And then there was the prospect of an animal sleeping on me, or against me when I had limited mobility and a lot of very tender areas.

We decided I’d sleep in one of the spare rooms — Susan’s room with the pull-out couch-bed where our few guests stay. My own work room was, of course, made even smaller by the large collection of books that both lined the walls and covered a fair percentage of the floor. Sleeping in another room would also mean that I would not wake her if I tossed and turned at night.

While I was in hospital, Susan made up her room and the pull-out bed, ready for my arrival. For at least the next few weeks, this would be my sleeping quarters. She thoughtfully made a place for the inevitable pile of bedside books, and placed a reading light nearby.

*****

I left the hospital shortly after noon. The drive home was, itself, rather trying. Every pothole or sharp bend brought a protest of pain from my innards, or along the tender line of flesh held together by metal staples.  But Kevin got me back in one piece. I was relieved to be able to walk into my own home again.  Susan and Bella were glad to see me; the cats I’m not so sure. Such is their nature.

First order of business when I arrived was to get the kettle on and a cup of hot tea brewing. Damn, but I missed good tea. I slowly walked around the house, making my glacial way upstairs as Susan carried my bag into our main bedroom to unpack. Going up and down stairs tended to aggravate my urethra, so once I got into the bathroom I applied a liberal coating of Polysporin to the catheter tube and around the urethra to both protect it from infection and to help lubricate the tube. It helps, but frequent re-applications are recommended.

I got a chance to look at my scars in the mirror, too. Ever seen any Frankenstein movie? My abdomen might have made a good model for some monster’s reconstruction. I could count about 18 (16?) staples in my abdomen along a puckered red line. I had obviously had my groin shaved around the incision, too, which looked a bit odd but didn’t bother me otherwise. There were other inflamed scars to see: where the laparoscope and the Hemovac were inserted, as well as some odd bruising and marks from unknown machinery. I gently dabbed some Polysporin on the reddest parts.

I already had two future medical appointments booked: one in a week’s time to have the staples removed locally, the other in two weeks with the urologist to have the catheter removed and discuss whrogpat to do next. I didn’t anticipate much distress from the former, but the latter made me anxious. I’d had a catheter previously and the removal was a rather unpleasant memory. Like having a golf ball dragged through your urethra. plus there was the question of “did you get it all?” I wanted to ask.

By now, I had shed my anxieties about immediate mortality if not about my future prognosis. But since that had to wait for at least two more weeks, I concentrated on how to live day to day under these new and challenging conditions. I had to be careful and conscious of every step, every movement. Where my collection bag was and to be sure it was firmly attached had to always be foremost in my consciousness.

My experiences, of course, may not match your own if you go through any of this, but perhaps they will provide some guidance. As Catullus wrote,  diversae varie viae reportant (different and varied are the roads that carry us back: Poem 46)

Continue reading “The Cancer Diaries, Part 4”

The Cancer Diaries, Part 3

offThe operating room was cold. Not merely cool: winter cold. In my thin hospital gown, I felt the chill and shivered a bit. The nurse told me it’s kept cold to help discourage bacteria from thriving. I wanted to ask her about this, to chat about bacteria and their lives. I’d been reading about microbiology and the microbiome a lot of late, so I’m curious. But this was not the place or time.

I was helped onto the table, and a warm blanket wrapped over me. Very comforting. My arms were splayed out from my body on small side panels. I wanted to make a joke about crucifixion, but couldn’t find the words. Didn’t matter, because my mouth was covered with an oxygen mask. Someone I couldn’t see told me to breath. A nurse told me she would remove my underpants and return them with me to my room. Sigh. There went my last shred of dignity.

On my left, the anesthesiologist was putting something into my IV. I tried to look around, to see what’s happening, and then…

.

.

.

I woke up. Suddenly. It’s like that: you fall asleep without warning on the operating table and wake up abruptly sometime later in another location. I fell into the black hole of consciousness and came back on its sharp edge.

I hurt. A lot. This must be what it’s like to be gut-shot. My body, my abdomen was so very sore, so deeply sore. I tried to breathe slowly, measuring the pain by breaths. My walnut-sized prostate was gone, but for such a small organ, it made a big pain in leaving.

There were nurses and the doctor around me. I might have spoken, asked questions, said something, they may have spoken to me, too, but I don’t recall much of that initial period. They may have given me painkillers. The anesthesiologist had warned me there might be a gap after surgery, a time when I would be lucid, but not forming memories. I vaguely recall being wheeled from the recovery area along a corridor to my room. The pain dimmed to a dull discomfort, no doubt thanks to the pills.

Doctors and nurses will ask you about your pain somewhat frequently. They have a scale of 1 to 10, where 10 is the most unbearable. It’s entirely subjective, but that’s how they determine what medication to give, or perhaps what additional medication, since they already have a regimen of painkillers and anti-inflammatories scheduled. I was around 4-5 after the surgery, but gradually the sharpness subsided so most of the time I was 2-3. Sometimes, when I was relaxed and reading in the hospital bed, I hardly noticed it at all. If I forgot and tried to move,  or shift in the bed, however, I got a sharp reminder in the 3-4 range to be careful.

Continue reading “The Cancer Diaries, Part 3”

Can an atheist be a good citizen?

The answer to the headline’s question is no, at least according to the late Catholic priest Richard John Neuhaus in a podcast in the Socrates in the City series (Sept. 22, 2004; I came across it as one of the chapters in the 2012 book from the podcast, Life, God, and Other Small Topics. Neuhaus’ talk was actually based on a 1991 piece he wrote.) To which response I must respond: codswallop.

Not that I expect religious employees like Neuhaus to defend atheism, but to suggest people can only be good under the influence of the supernatural — and even then only their particular version of the supernatural — is an arrogant, ideological statement, not one of fact. It’s been debunked by much better minds than mine (Sam Harris, Christopher Hitchens, Richard Dawkins, and Robert Buckman come to mind). 

Interestingly, the Catholic League weighs in on the debate, Can We Be Good Without God, without entirely refuting Neuhaus, but rather by expanding on several points of the argument. However, the conclusion the author of that piece reaches is that “Ultimately, yes, one individual here, another individual there could be really sweet and fine without God, but a system that obliterates the religious basis of morality will ultimately consume itself.” To which, I again say, codswallop.

Neuhaus’s perspective is regrettably narrow: Christian, Catholic, and American. He takes pot shots at Protestants, especially recent ones, doesn’t comment on other world religions at all (as if they were invisible), ignores non-theistic philosophies, doesn’t talk about levels of governance aside from the US federal, rambles about the American founders, and ignores the experience in other countries. Even in context of his American perspective, he blithely sidesteps the vexing Constitutional separation of church and state by not raising it at all. For such a big issue, his answer is a peashooter response that misses the target entirely.

Yet for all my disagreement, this is the sort of philosophical debate I love to read about and engage in (not that there’s a lot of opportunity to actually debate these days; Facebook is just a noisy echo chamber). So my participation is mostly limited to reading the works of others and blogging about my own perspective. So here goes.

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The Cancer Diaries, Part 2

There was an episode in the original Star Trek series called The Deadly Years in which Captain Kirk and some of his companions aged rapidly. At one point, the ship’s computer pegs Kirk’s age at between 60 and 72: he stumbles around clumsily, bent, shuffling, is forgetful, has anger issues on the edge of senility. He’s a caricature old man. Watching it recently, we laughed at the cartoonish portrayal of someone who could be a decade younger than we, yet behaved like he was much, much older.

But there I was, a few days after surgery, bent and shuffling like the over-played Kirk. Simple movements, basic acts of muscles, were painful enough to make my body behave slowly and cautiously. I was careful not to put pressure on or pull areas where cuts had been made, or staples held fragile fresh together. And the catheter – well, let’s save that for later.

A reader asked me about the first part why I wrote about something that was, for them, intensely personal and thus private. My response was that there’s no shame in having cancer, nor in discussing it. In fact, those cultural veils I mentioned in part 1 also obscure our conversations about cancer, especially those cancers that affect organs associated with sex or procreation. Prostate cancer is just one, and I believe we are better off discussing it than avoiding it.  As my muse, Montaigne, did, I often write about my personal experiences, so perhaps my own experiences may help someone facing these issues in future. But I digress.

I neglected to mention in part 1 that I had had two follow-up hospital tests out of town (both scheduled for the same day) in the weeks following my biopsy; one for bone density, the other a CAT scan. Both were intended to help the doctor determine the extent of the cancer. Had that little rebellion reached out and crossed over to other organs? Infiltrated my skeletal structure? Crossed my biological Rubicon? If so, the prognosis would be more complicated, as would the treatment.

These tests were painless, aside from a few small pinpricks for blood samples and the injection of material required for the scans. More time was spent waiting than testing, so I was fortunate to have brought a couple of books. As in the past, I sat in waiting rooms with other masked and gowned strangers, all avoiding eye contact. Separated from one another beyond comfortable earshot, we were not talking. A sad silence hangs over these rooms.

(Always bring a book or books if you go for tests anywhere. Reading helps distract the anxious monkey mind from dancing around in useless speculation.)

The tests themselves require large, slightly intimidating machines where one lies, motionless, while the hardware moves and groans. For all its Star-Trek-like machinery, it’s a dull process and I almost drifted off to sleep during one of the longer segments of inactivity (I kept wanting to ask the nurse to beam me up). The nurses and technicians were efficient and friendly in a distant way, but not chatty. Patients don’t really get to know what’s going on as well as I think we should.

In the end it was easy enough to endure everything, even the inevitable waiting. In pre-pandemic times, afterwards I would have found a coffee shop to sit and ponder the events I had just experienced. Instead, I drove home, alone, absently listening to the local classical music station on the radio.

I had to return to the urologist for a conversation about options and another prostate finger poke. This time he wanted to check to see if my prostate was moveable, which would indicate surgery was an option. That was somewhat painful, but he believed his finger wiggling indicated my prostate was not fully fixed, so he could operate. That was welcome for all the discomfort it took.

The hardest part was, again, waiting for the test results. I had already decided that, if I had the option, to go for surgery – a prostatectomy (or properly a retropubic radical prostatectomy) – rather than radiation, in large part because I didn’t think I’d be able to make the ten-week, five-days-a-week radiation schedule on my own, and would not have a driver for that, either. Plus, as I understood it, I could always have radiation after surgery, but not surgery after radiation. Radiation, too, was harder on the body and physically draining.

The options were not inspiring, and I wasn’t even sure if I really had a choice.  I might simply be faced with one path or death. To paraphrase Edgar Rice Burroughs from The Gods of Mars, I was between the wild thoat of certainty and the mad zitidar of fact, and could escape neither.

Frankly,  even if it was my first choice, surgery of any sort, but especially where an organ is removed, and its absence in the aftermath, was not comforting to contemplate. 
Continue reading “The Cancer Diaries, Part 2”