Am I Weird?

As a victim of advanced prostate cancer, I see a lot of doctors. For about a year and a quarter, my care was overseen by a very highly regarded oncologist at the Dana-Farber Cancer Institute. Late in 2017, however, she apparently concluded that there was little or nothing more they could do for me. She said I could expect to live another three months or less … six if I was lucky … and she recommended I sign up for hospice care.

Now I’m sure hospice is extremely beneficial and comforting to many, many terminally ill patients and their loved ones. However, the concept of hospice is that you are in the final stages of illness, and essentially give up on the idea of treatment. From that point, you can expect interventions only to relieve pain and discomfort.

There is no way I was ready for that!

I’m still quite independent. I shower and dress myself, get my own food when necessary, and maintain a limited but fulfilling lifestyle. I go for walks. I host friends and family (though my wife is stuck with most of the work.) Writing for this blog actually gives me a sense of purpose. And then, of course, there’s the all important watching of TV. Somehow, I can not see myself just sitting at home waiting for the grim reaper (especially not if he or she comes during “Jeopardy.”)

But this seems to be what most oncologists expect.

Most of the doctors I’ve spoken with since seem to regard the “3 to 6 months” as a prescription rather than a prognosis. (“Kick two buckets and don’t call us in the morning.”)

It’s a mystery to them why I would waste their time and resources (drugs, blood for transfusions, etc.) when I’m clearly just biding my time. Several doctors have told me how much respect they have for my Dana-Farber oncologist, implying that I’m somehow defying her expertise by trying to live like … well, like a living person.

Fortunately, over the course of a number of doctor’s appointments and hospital stays, I have encountered a very few doctors who get it. These select few seem to understand that, despite my bleak prognosis, I’m trying to conduct my life like a life … to pursue any avenue that might delay the cancer’s progression, and to stay as comfortable and even energetic as possible while doing it. These are the doctors I want on my team.

Mind Share

State of the Prostate (Update)

I’ve always been aware of cancer. I thought the definition was:

cancer

(‘kansər) n. An often fatal disease that other people may get in one body part or another.

The keyword is other. This is supposed to happen to people on TV or in the news. Sure, I’m sorry to lose a David Bowie or an Alan Rickman, but hey, they’re not me.

And body parts? If you follow the social media, breast cancer is the trending one … the meme. You see pictures of joggers with their pink ribbons running through big arches of pink balloons. But you don’t see anyone racing for prostate cancer, past tall columns of blue balloons.

Prostate cancer is supposed to be like cut, cut … ok, you’re all set. Have a nice life.

Not cut, cut … hmmm … ok, zap, zap … hmmm … ok, take 20 of these every day for the rest of your life. And by the way, don’t worry. You won’t need a refill.

When you first get a cancer diagnosis, it’s like being hit by a meteorite. It’s random … unpredictable.

Of course, you immediately (well, after you get past the denial) start rationalizing. What did I do wrong? How could I have prevented this? Too many carbs? Not enough exercise? The answer is: Probably all of the above, and then again, no. This is not like heart disease or diabetes or one of those other conditions the medical establishment loves to blame on the patient. Cancer gets you some slack. Doctors blame it on your genes, so you’re off the hook. You can’t help your genes, right?

In fact, if you’re male, your odds of getting cancer somewhere at some point in your life are 1 in 2. If you’re female, 1 in 3. So other guy, you owe me!

But it’s not completely random. Cancer does have a purpose. It’s purpose is to make you stop and think “What am I doing with my life?” If you don’t have cancer, it wouldn’t hurt to think about this anyway.

Artist's Prostatement

There are many kinds of cancer from the head down to the toes.
They can cause disfigured organs or just pink spots on your nose.
But my favorite one, for reasons even I don’t understand,
Is the cancer that begins inside the humble prostate gland.

You can talk of brains and bones and breasts and lungs and nodes lymphatic,
And of course these cancers all have quite a flair for the dramatic,
But even the affliction of the skin that’s over-tanned
Just pales when it’s compared to cancer of the prostate gland.

Most normal prostates function well and people do not mind them.
And even an enlarged one, men will try to put behind them,
Especially when the doctor checks with latex-covered hand
For signs of abnormality within the prostate gland.

And if, alas, you have some symptom needing further study,
Such as difficulty peeing or ejaculate that’s bloody,
A prostate biopsy will almost certainly be planned
To see what’s going on inside that humble prostate gland.

You can whack this thing with several thousand rads of radiation
(And hope the treatment, of itself, does not cause some mutation)
You can have the whole thing excised with a cool robotic hand
But you still might have to deal with cancer of the prostate gland.

And if, when treatment’s over, luckily you’re cancer-free,
And your side effects no worse than having constantly to pee,
If all your other functions come back, that is simply grand,
You still should show respect for cancer of the prostate gland.

So stand up hand in hand across the land now and demand
Research be planned to understand the cancerous prostate gland.

Cancer Comics #5: Support Group

Cancer Opens Doors

There has never been a better time to have cancer. In an article titled Why Everyone Seems to Have Cancer, The New York Times reports, “cancer is on the verge of overtaking [heart disease] as the No. 1 cause of death.” We’re number one! We’re number one!

It makes me want to run out and get one of those giant foam fingers.

And while cancer is becoming ever more popular, it still commands enough awe and respect to afford special privileges for cancer patients. Waiting rooms in radiation therapy offices are filled with baked goods, clothing and other items donated for the benefit of the cancer patients. (Well, not mine, but others I know of.) An organization called To Show We Care offers cancer patients free tickets to theater and musical events. Hospitals provide yoga, acupuncture and other stress reduction services.

And that’s not even counting child-oriented facilities like the Make a Wish Foundation or the Ronald McDonald House, where seriously ill kids can enjoy a respite with their families in the shadow of a junk food mascot.

So if you’ve ever considered cancer, now’s the time to jump on board. Don’t wait until it becomes last year’s thing.

Cancer Comics #3: The Three Warning Signs of Prostate Cancer

Excuses! Excuses!

I know my posting has been somewhat erratic lately. I don't mean to whine, but I've been kind of preoccupied. Since the beginning of last year, I've lost both my parents, my father-in-law and my prostate.

Unfortunately, the prostate did not go quietly. It seems to have left a little something behind … some prostate-less terror cells running around somewhere.

So the next step is carpet bombing the area with radiation. I'm not sure exactly how this works, but it basically involves a radiation beam aimed at my most intimate portions. I keep picturing that scene from Goldfinger where James Bond is strapped to a gold table while Mr. Goldfinger plans to unseam him from the nave to the chops and beyond!

Along with the radiation goes hormone therapy or, quite literally, temporary emasculation. Since prostate cancer thrives on guy hormones, suppressing those hormones is the best way to slow it down. Warning: Side effects may include hot flashes, softening of muscle definition and frequent bouts of uncontrollable shoe shopping.

Does this blog post make me look fat?

Less is More

A couple of weeks ago I had an unnerving experience.

Since my prostate was removed six months ago, I’ve been hoping for PSA test results of < 0.1. That means the PSA, the marker for prostate cells and, after a prostatectomy, for recurrent prostate cancer, is undetectable. There’s not enough to measure. That’s a very good thing.

But last month, I learned that one of my tests came back as 0.1. Not < 0.1, but 0.1 … detectable. PSA was found. In other words, cancer had returned. And I scarcely had time to miss it. The absence of “<” changed my thinking about life in an instant. Particularly my thinking about continuing it.

As it turns out, my oncologists ordered an immediate retest, and this time, it came back as < 0.1 … the hoped-for result. The earlier reading was a fluke. Statistical noise. Even a typo perhaps.

But that 24 hour period was chilling.

When I was first told I had prostate cancer, and that it was too aggressive to just wait and see how it develops, I elected to just have the damn thing removed. I could have opted for radiation, but cutting the prostate out seemed much clearer to me.

But once the prostate’s gone, if you still have PSA, the cancer cells become like terrorists … prostate-less enemies with no organized … um, organ to use as headquarters. Instead, they’re at large, finding their way around the body in search of new places to set up shop. And there’s no shortage of hideouts.

So how do we find them? How do we hunt down and neutralize all these terrorist cancer cells? 

Seriously, how?

Catheter Ergo Sum

CONTENT ADVISORY 

The following contains graphic descriptions of truly icky medical stuff. Reader discretion is advised. Elderly, pregnant women and passengers traveling with small children take note. 

The human body is a marvelous machine, an incredible number of complex systems and materials contained in one compact (usually), attractive (hopefully) package. But it has a couple of flaws. One is that we eat and breathe through the same opening, which leads to the risk of choking. On the other hand, this also creates the possibility of burping, so we shouldn’t be too quick to judge.

Another flaw is that we use the some of the same organs for waste elimination and for sex. While this does allow us to economize on underpants, it has some serious drawbacks. In particular, men have an organ called the prostate which is employed by the sex department, but whose office is over in the waste elimination area.

Once in a while, the prostate develops cancer and has to be removed. When this happens, it’s necessary to re-attach the bladder (Latin: uesicam) to the urethra (Latin: urethra), and this takes time to heal. (Healing is another one of those amazing human body things. Imagine the contractor putting an addition on your house saying: “Ok, the work’s all done. Don’t worry about the siding. It’ll grow back.”)

While this healing is going on, to facilitate the function known in medical circles as peeing, a plastic tube called a catheter is inserted through the urethra to drain the bladder. This is every bit as much fun as it sounds.

Via the catheter, the bladder just empties itself whenever it damn pleases into a bag. There are day bags that can conveniently strap to your leg, but which need emptying every couple of hours. There are also night bags, which let you sleep through the night while being as comfortable and convenient as a ball and chain.

To change bags, simply undo the leg anchor, hold the current bag upright, pinch the catheter closed and disconnect the bag. While continuing to hold this bag upright, and still pinching the catheter shut, clean both the new bag connector and the catheter with alcohol wipes, attach the new bag to the leg anchor, and insert the connector into the end of the catheter. Then detach the old bag, still holding it upright, and empty. Then attach the new bag.

Careful calculation shows the entire process requires no more than 7.43 hands to complete.

While the catheter is a serious medical device, intended to address severe urinary problems, it does allow you to watch the entire Star Wars saga without a break.

Competing Cancers

The age old battle of the sexes is playing itself out on a new front … the publicity campaigns for breast cancer and prostate cancer. And men, we’re losing!

That’s right. Breast cancer has all the media and the public’s attention. There are races marked by giant arches of pink balloons. There are pink ribbons and lapel pins, pink t-shirts, posters and banners. But most importantly, they have a body part everyone can relate to. Everyone knows breasts! There are whole magazines devoted to the subject. When was the last time you saw a prostate magazine?

Men, the time to act is now. I propose a media counter-offensive to get prostate cancer in the spotlight. We should pick a color to represent us. I suggest yellow, the color of … well, it’s a good color.

Next we need to organize sporting events. I’m tempted to suggest bike races, but prostates and bike seats? Not so good. Maybe a nice slow walk? Or a couch potato contest?

But above all, we need to get prostates into the hearts and minds of ordinary people. We need to make prostates as well known and loved as breasts. Maybe something like this will do the trick.

Charity Ends At Home

Philanthropy is a wonderful thing. People donate money, time, even parts of their own bodies. After all, as Spock said, “The needs of the many outweigh the needs of the few.” That was Mr. Spock, by the way. Dr. Spock said, “You know more than you think you do.” (I could think of a number of exceptions to this, but that’s for another time.)

So I’ve decided to become an organ donor. Specifically, I’m donating my slightly used prostate to science. I couldn’t find anyone who would pay for it, but perhaps I can take a tax deduction. In fact, if I estimate the value of the prostate by what the hospital’s charging to remove it, I could do alright.

And as it turns out, I work for a company that sells software to hospitals, so maybe I can close a deal or two while I’m on the table. I mean, I’m going to be there anyway, right?

I tell you all this by way of explanation. There may be a brief interruption in the activity of this blog. In that event, should you become desperate, we invite you to peruse the best (and worst) of The Tech Curmudgeon at http://www.techcurmudgeon.com ... something to offend everyone.

Prostate of the Art

Long-time readers are aware that I’ve tried a number of approaches to enlarging the audience of this blog. I’ve tried using trendy hash tags like #colo-rectal and #precambrian. I’ve tried using whimsical illustrations, ‘shopped photos and even cats. I’ve tried the direct appeal … shamelessly asking readers to refer their friends. (Of course, the usual recommendation is to post engaging content consistently, but hey, that’s not going to happen.)

After mulling this over, it has occurred to me that the best way to increase readership, gain attention, and generally make an impression is cancer. That’s right! Cancer. Just look at what it did for Frank Zappa and Steve Jobs, not to mention Angelina Jolie. Cancer is what makes doctors drop their usual peremptory tone and instead engage in serious, sympathetic conversations. It’s what sends thousands out to walk, run and bike endurance courses each year. And it’s what motivates the Make-A-Wish Foundation to fulfill people’s dreams.

So you can imagine how I felt when the prostate biopsy came back positive. But I don't want to paint too rosy a picture. Certainly there are downsides to being diagnosed with cancer. It does mean spending a lot of time with hospitals, doctors and nurses and copies of Newsweek from the Nixon era. It also means making difficult decisions, like how much quality of life would I sacrifice for the sake of more aggressive treatment? (Bear in mind that one of the qualities of life I’ve always valued is having lots of it.) And both the disease and the treatments have potential unpleasant side effects, such as death or difficulty peeing.

But the promotional opportunities are undeniable. Of course, I found out too late that cantankerous whiners are not really the Make-A-Wish Foundation’s target demographic. But what the heck? I’ll start my own charity, The Tech Curmudgeon Foundation for Cancerous Cranks, Misanthropes and Anti-Social Misfits. (Okay, so TCFCCMASM doesn’t really sing, but hey, MAWF?)

Maybe there could be an annual Tech Curmudgeon Ride, in which everyone has to use some unusual human-powered vehicle. Trikkes, ElliptiGOs, unicycles, etc. would be the norm. Of course, if this event ever became too popular, then the unusual would become commonplace. But at least it would get the name Tech Curmudgeon out there.

Of course, the odds are pretty good that this is completely treatable. Then I’ll just have to go back to trying to think of something clever.