Setting a GOOD Example in those Declining Years

Or not… Since I published my book I have met with a dozen or so small groups of men and their wives to discuss prostate cancer, their survival, my survival, and of course my book. The groups are generally small (often really small) and the talk is very interactive – with others asking questions and making comments as I proceed. It’s all very calm and relaxed.

More often than not the questions sound like, “What should I do?” “What’s the best treatment?” “Does my Doctor know what he’s talking about?” “You must know what works – so share it with us!”

I really don’t know what they should do (except to buy and read my book). Sometimes they think I’m withholding information from them. After all, I have prostate cancer and I wrote a book so I must be an expert. Don’t I wish…

I tell than that if I knew of a cure for prostate cancer I would first cure myself and then share that information with the rest of the world – for a small fee, of course.

What I can do, and try to do, is to live my life the way I say that I do (in the book and during the talks). Whatever it is that I do must be working at least a little - I’m still alive. Basically that consists of good nutrition, staying active, keeping a positive outlook (most of the time), and thinking pure thoughts (OK, probably not the pure thoughts part). I’m not a saint, not even a little bit saintly, and would not recommend that anybody emulate me – unless they came to that conclusion after checking things out for themselves.

Men with prostate cancer should (probably) get as much information as possible, make choices based on their best judgment, and be willing to change direction if something doesn’t work. As far as I can determine, nobody knows for sure what anybody with prostate cancer should do.

axman

Men and Doctors – Keeping One from the Other

I’ve never known a man who would willingly go to see his doctor unless blood was gushing from a manly wound someplace. We all know it’s a good idea to get checkups, vaccinations, and prescriptions from time to time. But I put off doctor visits until my wife yells at me (inducing greater fear than seeing the doctor) and sometimes (usually) she even calls to make the appointment.

Most of the women I know make regular doctor appointments, write them down, and then actually show up at the appointed time. They don’t even make a big deal about it. Rumor has it that women (in general) live longer than men (in general). Could there be a connection between seeing a doctor and living longer? Nahhhh.

Don’t get me wrong, I get along just fine with my doctors. I even like them. I see four or five different physicians from time to time. Not one of them has ever mistreated me, lectured me, or even pointed and laughed. Maybe it comes down to some primordial need or urge to be manly and take care of myself. Or it may be inherent stubbornness or laziness – more likely. My wife would agree with all these reasons.

axman

Get 'er Done!

Rule #1 of Retirement: If you can do it yourself - you MUST!

Well, that's more my wife's rule than mine, but there is this mindset that as time gets shorter you hurry faster to get it all (whatever all means) done.

This summer we needed a new roof over the back deck and new siding on the house. You'd think that your average decrepit, sickly, elderly couple could find a younger and smarter and stronger handyman (or handywoman) eager for the job. After a brief (very brief) discussion we decided that we could easily do it by ourselves over the course of the summer. How hard could it be? And we'd save a bundle of money!

But the real reason we choose to do it may have more to do with that dratted work ethic instilled in us by our depression-era parents and grandparents. Hard work is good for the soul! Even though it may not be so good for the rest of the body.

It took two or three weeks to complete most of the work and probably double that to heal. Next comes the painting - yup, we're doing that part, too. At least paint is less dangerous than skill saws, electric drills, and hammers - if you don't inhale too often. And there IS that feeling of satisfaction, impressing the neighbors, and owning the family bragging rights; "Look what WE did during our summer vacation!" Nobody seems all that impressed and a few brave souls even asked why on earth we didn't get somebody else to do it.

I've noticed that quite a few of our geezer friends, some of them in much worse health than we are, still feel the need and obligation to do all their own repairs and building and painting and mechanical work. Maybe we'll make a smarter decision next time - but not likely.

axman

Q - How Many Body Parts can Hurt at the Same Time? A - LOTS

It has come to my attention that the number of body parts that exude pain at any given time is gradually increasing as my age gradually increases. You may be experiencing the same thing.

A few hours of yardwork can lead to several days of sore knees, back pain a 'crick' in my neck, and hands that ache and won't respond to normal directions from my brain.

I know that all those things come with advancing age. But what about the effects of my cancer and cancer meds? According to my doctors (more than one) the pains don't have much to do with the cancer - yet. As a matter of fact my urologist told me, "What do you expect; you're 69 years old!" He always manages to say something to make me feel better (or not).

My day is usually better if I start off in the hot tub, walk a couple miles, and limit strenuous labor (involvling hammers and saws and chain saws and hauling fireplace wood) to a few hours a day - and not every day, That way I can better manage my pains such as sore knees, back pain a 'crick' in my neck, and hands that ache .

Feeling pain tells me I'm still alive - and most of the time that's a good thing.

axman

Oh No! It's Back! Not Fair!

My PSA started to increase almost immediately after my prostatectomy in 2003. So other than the immediate shock, anger, and feeling sorry for myself, I have lived with the reality of recurring prostate cancer from the start.

In the past several months two old (with prostate cancer the 'old' part goes without saying) friends who underwent treatment five and eight years ago discovered that their PSA had started rising again. In fact their PSA had doubled every several months for quite a while. Both thought they were cured. For years their PSA had been near zero. They were sure they were cured.

When confronted with 'recurrence' they were understandably devastated. This happens to thousands of men every year - recurrence after five or ten or more years of being cancer free.

Being diagnosed with prostate cancer 'again' can be more emotionally difficult than being diagnosed the first time.

"It can't be happening again!"

"It must be a mistake!"

"I'm going to check with another doctor - one who will get it right!"

"I'm sure it will be OK when I get re-tested next month."

"OMG, I'm gonna die!!"

What can You Do?

First of all, stay calm. In the world of prostate cancer there is usually no reason to hurry up and take action. There are many treatments and the options vary depending on what treatment or treatments you had originally. Surgery or radiation or radioactive seeds might be options if they were not done previously. Hormone therapy may be appropriate. Or maybe your oncologist will recommend watchful waiting - at least for a while. There is bound to be SOMETHING you and your doctor can agree on. Don't panic. Don't rush to do something before you think it through. Keeping a positive attitude (not always easy) may be the best therapy of all.

axman

To Pee or Not to Pee...

...that is the question. Of course you recognize that line from the famous Shakespeare "Prostatectomy" soliloquy - or maybe not. But the question is relevant to anyone who has had one or more prostate cancer treatments in the past.

You've no doubt seen some of the numerous late-night TV ads for men who have trouble with urination (enlarged prostate/BPH). They tout all sorts of pills and liquids and ointments to make passing water easier. Us men who have been treated for prostate cancer have no such problems. As a matter of fact you can probably go pee any time you want - and sometimes when you don't.

After six years of various treatments - ranging from surgery to radiation to hormone pills - I have had reason to be concerned. Even though I long ago decided that living in a diaper was better than being dead without one, I did NOT want to go in that direction.

The bad news: You probably know that your likelihood of incontinence increases in the years after treatment.

The good news: There are some things you can do to improve your odds, so don't give up hope. I didn't.

For years I have done Kegel exercises (when I could remember) and that probably did help. More recently my Urologist prescribed some pills to relax my bladder. How could that help, I asked? He said that sometimes a more relaxed bladder makes it easier to control those unintended leaky moments. After a month I saw no difference, but after six months there has been a major improvement. It could all be psychological but that's OK, too. And I have a relaxed bladder - assuming that's a good thing!
axman

Think I'll Take a Nap

Every couple days I get the urge to take a nap. I don't necessarily want to take a nap - it makes me feel like the old Grandpas you see on TV snoring away in their rocking chairs. It tarnishes my self-defined macho image.
My Doctor assures me (or reassures me) it's just that I'm old as dirt (almost 69). That's true, of course, but I don't actually feel that old.
Fatigue is listed as a possible side effect for each of my several medications. Now that's something I'm more willing to believe.
And there's the possibility that it's the biological process of my ancient immune system fighting off the Prostate Cancer that tires me out a bit.
Whatever it is, my energy level is definitely below par (at least below what I want it to be). It could be that the old geezer nap might not be such a bad idea after all - maybe. I'll let you know.
What is your experience with fatigue - and overcoming it? Let me know.
axman

More About Clinical Trials

Back on April 8th I talked a little about my experience with clinical trials. I'm doing some research on who particpates in clinical trials - or more likely who is NOT participating. Fewer than 5% of those with cancer ever join a clinical trial.

Why don't people participate? Nobody knows for sure but there are some interesting survey restults. More men than women participate - a bit of a surprise because women are much more likely to seek medical treatment. About half of those doctors surveyed reported not even telling their patients about clinical trials. They cited being uncomfortable about discussing trials as a major reason. You may have to ask THEM!

Some people who know about trials opt not to participate - everybody has that choice. Some Health Insurance carriers refuse to pay for any cancer treatment if you are participating in a clinical trial. In about half of all states there are laws that now require Health Insurance carriers to pay for 'normal' treatment costs that would occur whether or not you were in a clinical trial. Medicare (if you're covered) pays for most regular treatment costs if you participate in a Clinical Trial.

Some trials have been cancelled because they couldn't get enough participants. That delays approval of potentially helpful drugs.

I definitely want any drug that might help me to be tested and approved if it actually works. So if you're so inclined and eligible - at least think about participating.

The NIH (National Institutes of Health) has a comprehensive site listing trials abailable all over the U.S. http://www.clinicaltrials.gov/ct2/results?term=cancer.

axman

Don't Read the Fine Print!!

Like many of you, I've been taking several medications to "manage" my prostate cancer for a while now. There are dozens of drugs in several categories that are supposed to slow prostate cancer growth in strange and unique ways. That's old news.

If you have a slightly perverse mind - like me - spend an entertaining half hour googling your meds and checking out the Side Effects section (sometimes called contraindications). No matter what the drug, there will be a list of possible side effects as long as your arm - it's required by law.

After reading about the possibility of hot flashes, constipation, incontinence, diarrhea, cramps, swelling, headaches, weight gain, memory loss, and impaired vision it seems I might be better off with the cancer than the side effects! My oncologist says different but HE isn't taking my pills. But to tell it like it is, I haven't actually experienced MOST of the possible side effects.

So, I have decided (for now) to ignore those lists until I actually experience a contraindication or two.
axman

Watch Out for that BUS!

Just after I found out my prostate cancer had 'recurred' after the surgery to end all surgeries and cure me forever, I was feeling pretty sorry for myself. Why me? It's not fair! I'm going to die a horrible death! My urologist didn't seem so upset. I was just one of 50,000 American men who was diagnosed with recurrent prostate cancer every year.

He told me, "Don't worry, you'll probably get hit by a bus before your prostate cancer kills you." Somehow that was reassuring. Nobody knows what will happen next. I actually could get hit by a bus tomorrow or I might live to 97. Men with prostate cancer die every day of all sorts of reasons other than prostate cancer. And most men with prostate cancer survive every day.

All I can do is get up every morning and do something I want to do and then repeat the process tomorrow morning. Easier said than done, but my level of anxiety is much reduced over these six years even though I still have prostate cancer and it is relentlessly, but slowly, progressing.

So I do what I can, try not to worry about what I can't control, and I stay far away from rogue busses. So far - so good!

axman