The Cancer Diaries, part 8

Diseases desperate grown
By desperate appliance are relieved,
Or not at all.
Shakespeare: Hamlet, Act 4 Sc. 3

Those Kegel exercises sure work. I had my doubts at first, but I stand as living proof they are effective. My pelvic muscles could probably lift a car — well, whenever the doctor tells me I can start lifting things again, that is. And my anus can clench more tightly than a conservative’s when he is confronted by a liberal suggestion to raise the minimum wage to a liveable amount.

It’s been 51 full days since my surgery. I can also count it as:

  • 4,406,400 seconds;
  • 73,440 minutes;
  • 1,224 hours;
  • 7 weeks and 2 days;
  • Approx. 14% of the year.

Funny, though. It seems so much more recent than that. As if it was only last week, not seven. I suppose that’s because every day I am reminded of it in a dozen ways, so it stays fresh in my memory. And being reminded of it, i am also reminded daily of my own mortality. Not morbidly, just that I am still a week away from learning about my condition and future (was the cancer removed or does it still eat away at me? if so, what does my future hold?).

Incontinence is a minor (at its worst) issue, and most of the time doesn’t even arise. Unless, of course, I sneeze. Or fart. Or cough… those explosive actions often (but not always) squeeze out a small drop. Nothing much, but enough to remind me I’ve still some time to go before I am fully recovered. 

But otherwise, not a squirt comes out during my daily activities, and I seldom even think about it. Still, I continue to do my exercises, just in case. And to build towards the day when I have no need for any sort of protection. I did try an experiment a couple of weekends ago of not wearing a pad one day, but it was a bit too optimistic to do it so soon. Maybe I’ll try again in a week or so.

Continue reading “The Cancer Diaries, part 8”

The Cancer Diaries, Part 6

I’m sitting here, on my back deck, in the late Friday afternoon, beside Susan, trying to take stock of my life over a glass of wine, and read a bit while the light’s still good. I’m 30 days past my surgery and recovering reasonably well, but still three weeks away from my next set of tests, and almost four until I sit down with the urologist and learn if I still have cancer. And what happens next. All the rest of my life is on hold until that meeting.

My father lived to 92, and died of esophageal cancer, caught too late. He might have lived longer, otherwise, although he also had prostate cancer that might have caught up with him instead.  It was a horrible death, one that I also saw take my dear friend, Bill, many years later (fall, 2019). My mother died at 95, living long despite her stroke in 1960. Her father died at 94. I always thought I’d live into my 90s. My genes promised it. But of late, I am not sure I’ll even see 75. My father’s mother also lived into her old age, but his father died younger than her of prostate cancer. Maybe I have his genes.

Sure there may be treatment: radiation and chemotherapy, neither of which is appealling. They have nasty side effects. To what end do I go for treatment if it involves a steady decrease in the quality of life and only saves me a short snippet of time? It’s a bit like the Roadrunner and Coyote cartoons. Cancer is the Roadrunner that the Coyote never catches, and gets himself blown up in the process of trying. Sometimes I think of it like the Red Queen’s Race in Alice in Wonderland: you run as fast as you can simply to stay in the same place. I can’t even make up my mind about how I see it  until that next meeting.

I sit here with a pile of books beside me, trying to read as much as I can to get through all the to-be-read stacks that litter my house. Every day I sit outside with a small stack, sometimes the same books, often changing one or two. Never less than six, never more than ten, each with a bookmark to guide me back the next time I pick it up. There’s a pile or two beside the bed for my nighttime reading, too. Sometimes I augment them with books from my daytime reading.

I don’t know why it matters, but I just don’t want my life to end with so many unread books. Will I ever finish reading Proust? Or Casanova’s diaries? Will I even get to read the latest Murakami, so recently received? I keep wanting to re-read Chandler’s Campaigns of Napoleon, a tough enough task should I live to 90. Now it seems so much further from my grasp. I’m pretty sure I’ll never learn to read Latin, either, despite the shelf of textbooks to teach me.

Last year I read Will Schwalbe’s book, The End of Your Life Book Club. In it, he and his dying mother form a “club” to share and compare how they felt reading the same books together. She had cancer and they spent many hours in waiting rooms, in hospitals, in her palliative bedroom discussing their books. His book is a combination of her story, his, and their views on literature, and about shared memories. It’s very touching. I didn’t really appreciate it as much when I read it as I do now.

Continue reading “The Cancer Diaries, Part 6”

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”