Do Not Go Gently—

But DO go as much, as far, and as often as you can…

 

Both Carol and I vastly overused the medical system in January and February. It seems we had more than our share of medical maladies, slow recoveries, new pills, multiple tests, and it went on and on… We normally head south in early February to soak up some desert sun while the rain dominates our home in Oregon. This year we got away a month late, which is better than not leaving at all, and we have been basking in the Arizona sun for about a month now. We left the day after the last doctor gave us the last OK (or what we interpreted as an OK).

We are healthy, relaxed, tan, active, and have seen nary a doctor, clinic, or hospital in a while. Hooray! Of course, like so many of our friends, our life seems to revolve around the regular medical appointments we have for blood tests, med updates, exams, and the odd x-ray and scan. We accept that as part of our long term survival plan.

It’s those dratted unplanned health events that mess up our schedule. You can’t actually plan to get the flu a week from Tuesday, twist your ankle the day after the grandkids go home, or slip on the ice next month. All these things can, and do, happen whenever they jolly well please.

We are getting more stubborn (if that’s possible) about doing what we want, when we want, and finding ways to shortcut those medical procedures and that time consuming healing process. For example, we have learned to remove stitches (actually pretty simple) and perform other medical procedures that might otherwise keep us close to home. We haven’t mastered brain surgery yet, but never say never… 

As more and more health challenges can (and do) occur, it takes more and more planning to do what we need to stay alive and mostly healthy and at the same time live our life our way. So far so good, but it can sometimes require a bit of diabolical plotting. Isn’t life supposed to be challenging, exciting, and interesting?

axman

What do Men with Prostate Cancer Actually Want?

That’s easy—survival, survival, survival

For anybody with a serious, incurable disease (such as prostate cancer in case you’re wondering) survival is a pretty important life priority.

Laboratory research, new drugs in process, scholarly articles, and a multitude of clinical trials focus on the statistics, significance, percentages, averages, etc. But for each one of us with the Big C, it’s all about how any of this affects us. I want to survive and continue to be active, alert (moderately), and more or less healthy. 

I don’t much care what the name of the drug is, who manufactures it, its overall effectiveness, or whether it comes in pill form, injection, or IV. If it works for me—at least for a while—that’s what matters.

You’ve probably noticed that what helps manage one person’s cancer may be totally ineffective for someone else. So, as far as I’m concerned the more choices the better. In just the past six months I’ve been on and off seven different meds to find a combination that might slow my PSA progression. It appears that the current group is doing the job (hooray). Sometimes it’s a matter of being patient enough for the process to work and the right combination to be found (I hate being patient but it seems to work).

axman

How Much do You Really Need to Know About Prostate Cancer?

Is less better? Can too much information be detrimental to your health?

Whether or not you have prostate cancer or have even been tested for prostate cancer you've probably heard about the recent PSA testing controversy. If you have never had a PSA test, should you have one or not? Some experts say no, others say yes. Are you better off knowing or not knowing what your PSA score is? It's actually not such a simple choice.

Real Men Get Prostate Cancer Too looks at the pros and cons of having or not having PSA tests and the choices you may, can, or should make either way. And you're the one who has to make the final choices. Unfortunately there are no easy answers or general recommendations that will work for every man.

axman

The Advantages of NOT having a Prostate

Look on the bright side, old timer...

There is, of course, the nasty side of having your prostate surgically ripped from your body. There are side effects you won’t much like: a scar, some pain for a few weeks or months, a reduced sex life, and your bladder control never seems quite the same.

I’ve bemoaned all this and more. But what about the upside? Upside? There’s an upside?

Here is a list of some, if not all, of the obvious and not so obvious benefits I have observed and experienced from no longer having a prostate to kick around.

1. Most important to me - I’m alive seven years later and still counting

2. I never hold up lines in public restrooms (believe me, this can be a godsend)

3. I lost the two ounces the prostate weighed but I hardly notice the weight loss

4. I have an awesome scar to show anyone brave enough to want to see it (so far no one has ever asked to see it)

5. I’m definitely sterile – as if it matters to anyone as old as me

6. I can tell humorous and entertaining stories at parties about tubes and bags and diapers (my wife says definitely NO to this possibility)

7. Once the deed was done, it was done; no specific ongoing treatment – nobody ever gets a prostate implant – not yet anyway…

I consider my prostatectomy one of the more significant events of my life – after marriage, parenthood, grandparenthood, and running a few marathons.

axman

Living Life Three-Months at a Time

Maybe three month segments aren’t so bad…

My life is arranged around when I see my various and sundry doctors. Over a period of several years I have managed to get all my appointments set for a one-week period every three months. That leaves two and a half months to travel, camp, read, write, and totally forget my trials and tribulations – mostly.

I have long believed – but not necessarily practiced – that worrying about my physical ailments does absolutely no good. Over the past couple of years I have noticed that I rarely think about the progression of my prostate cancer or arthritis or even senility (I forget that I might be senile) when I don’t have a pending doctor’s appointment. Then, about a week before I see my doctors I do a quick check to see if I’m still alive and functional.

Most of my medical consultations are rather boring:
“What hurts – on a scale from one to ten?”
“Things haven’t changed much – that’s probably good.”
“Here’s your prescription.”
“See you in about three months – if I’m not on vacation then.”

Then, for almost three more months, I’m free (and healthy in my own mind) again. And my circle of medical life goes on and on. Does this kind of thing happen to you, too?

Axman

A Leged in My Own Mind

…how do I want to be remembered - is there even a choice?

When I was a kid growing up way out in the country, I knew a lot of older men who seemed ancient to me at the time – wrinkled, bald, fat, and sometimes crippled. I was told these guys were war heroes, ex-major league ballplayers, and bi-plane pilots. In my adolescent mind this wasn’t possible. Old duffers were always old duffers; they couldn’t possibly have been young and strong and brave in some past life.

Now I’m older than they were when I knew them. And even though I fit the description from above (wrinkled, fat, bald, and gimpy) I still remember the time when I was young and strong and adventurous. But how do my grandkids (and maybe great-grandkids) see me? Could they even imagine what I was like 25 or 40 or 60 years ago? Probably not.

Will they even know what it means to work your way through college? Would they believe I actually ran all those marathons and ultra marathons? And how could I have survived without HD TV, computers, cell phones, iPods, and especially wifi?

I guess the solution is: don’t worry about it, be happy. Keep doing what I do now. And accept the fact that I will be remembered as a strange old man and not the Greek God I would have like to have been in my wild, impetuous youth. My youngest grandchild was just born - what will he think of his old grandma and grandpa? Don't ask...


axman

The Benefits of Winter Sun

…if you can find some

One of the many benefits of retirement is the opportunity to choose my own climate of residence. Each winter we try to spend a month or two in a place that’s warmer and dryer than western Oregon. So far - so good.

Spring, Summer, and Fall are tolerable most anywhere but Winter is a season of a different color. Fog, rain, ice, clouds, and short days are not high on my pleasure meter.

So, we try to spend a month or two in a warmer climate each winter – Arizona most of the time. It’s not perfect – nights are cold and the wind blows a bit – but overall 70 degree days and lots of clear skies tip the scales for me.

And don’t forget the health benefits of sunshine and vitamin D and such. I have to admit, however, that the major benefit is mental! Somehow waking up to sunshine, daily walks without rain, sitting in the sun, and picnics in January improve my outlook. From my wife’s point of view that means I’m less grumpy and that improves her mental outlook. That’s a two-fer.

axman

Bring on Those Magical Cures!

When prostate cancer keeps coming back…

Logic, science, medical expertise, and common sense be damned; there comes a time when all that remains is faith, dumb luck, or magic.

So, we try the mud baths, salt water enemas, massive doses of Vitamin C or B, 20 cups of green tea each day, and even those hallucinatory mushrooms. And if it seems to work – even a little – we consider it a miracle.

When many types of cancer (such as prostate) come back after a shot or two at a cure, the rest of your time is spent being a ‘survivor’. “I’m still surviving; still alive.” That survival might be a few months or many years or somewhere in between.

If you want to know more about ‘miracle cures’ just go online. Google ‘non traditional cancer cures’ or ‘curing your own cancer’ or just ‘cancer cures’ and you’ll find hundreds of individual anecdotal miracles. “How Potato Peels Purified my Prostate” or “How Bungee Jumping Cured My Cancer.” Are any of these stories true? Is there any scientific evidence? Probably. Probably not. Maybe. Nobody knows. Everybody’s cancer is different from every body else’s.

Would I try a magical mystery cure? If the time and circumstances were right – yeah, probably.

Besides, I believe in magic.

axman

The Most Unpleasant Side Effects

…Still Slightly Better Than Being Dead

I routinely complain about the side effects from my surgery, radiation, and medications. But the fact is I am more than willing to endure the fatigue, weight gain, strange growths, hot flashes, and pain – as long as I can stay vertical or at least above ground. Surviving trumps lots of other stuff; no matter what others may tell you.

Time, research, and improved medications are resulting in fewer side effects – or so I’m told by highly educated medical practitioners. At the present time I’m still alive and more or less able to lead a normal life. Normal for an old duffer anyway... And I can use my current side effects as an excuse to avoid working in the garden and cleaning out the gutters (please don’t tell my wife).

I’m betting that all my elderly friends who bemoan the strange side effects they’re coping with wouldn’t trade those side effects for a pine box – just yet. Senior life, living with incurable diseases, and normal wear and tear requires choices and compromises – and a little hell-raising if you’re lucky. I am.

axman

Go to a Prostate Cancer Conference, Old Man

I recently attended a large prostate cancer conference at OHSU in Portland, Oregon. There were about 100 people in attendance – mostly old men with prostate cancer (like me) and their significant others (like my wife). The day-long affair consisted of short presentations by doctors from a variety of prostate cancer backgrounds – surgery, radiation, research, nutrition, and new treatments. There was a lot to learn.

The good parts:
· There was a lot of information and handouts and slides
· Some presenters were articulate, clever, supportive, and even inspiring
· Everyone was allowed to ask questions in an informal atmosphere
· There was more than adequate coffee, snacks, and lunch
· Rest rooms were large and nearby – a very good perk

The other parts:
· Some presentations were techno-babble heavy and hard to follow – Doc Talk was abundant
· There was little about “What might help us guys with prostate cancer right now”
· Much of the focus was five or ten years down the road – we don’t all have ten years…

Bottom Line:
It was worthwhile and I’ll go again next year. You can check out a complete video of the proceedings by going to: http://www.ohsucancer.com/index.asp?fuseaction=prostate.conference.
Check it out – you might learn something. You can fast forward through the parts you’re not interested in.
axman

Ego, Physical Decline, and Self Worth

I ain’t as good as I used to be. But then, few of us are...and maybe I never was!

Whether you’re healthy, relatively healthy, or ravaged with disease you will be going through a physical and probably mental decline if you live long enough. Whoopee! Getting your strokes by being faster, smarter, or more successful than somebody else doesn’t last forever. New parameters are needed – like being happy with still being alive.

Sometimes I sit around with my geriatric buddies and we inevitably get to talking about the good-old-days. Ironically, I used to make fun of my parents, aunts, and uncles when they did the same thing. Now, good-old-days means when I could do the things I did as well as I could do them – at least in my mind. Maybe it’s a matter of, “The older I get the better I was.”

There is some comfort in reminiscing about the past – it takes your mind off the trials and tribulations you’re dealing with in the present.

I’m not advocating living in the past. Carpe Diem! I enjoy living in the present – most of the time. Do what you can for as long as you can. Of course it would be nice to be young and strong and fast and have more hair - again.

Now that there are so many things I can no longer do I need to focus more on what I still can do. There must be something - besides writing a blog, that is. As long as I have loving (more or less) friends, kids, grandkids, and a tolerant wife, life is still pretty good. Different - but good. Painful - but good. Slower - but good.
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

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

Positive Attitudes - Bah Humbug

I keep running into guys with prostate cancer - I actually seek them out. My mercenary side tries to sell them a book or two. My warm and fuzzy side wants to share information on the secrets of survival.

To a man, they seem genuinely optimistic. "I'm figuring they'll find some better treatments in a year or two." "I feel better than I did six months ago!" "I'm not dead yet!"

I've even noticed subtle changes in my own skeptical, curmudgeonly life style. For a couple of years now I've made an effort to reconnect with old friends I hadn't seen in 20 or 30 years - or even more. The reunions have been great - even a little emotional sometimes. And, a high percentage of those old geezers have prostate cancer or some other cancer. Nobody ever complained; just shared. Maybe that cup is half full after all.

axman

And the BEST Treatment is…

OK, OK, nobody really knows, but in a new research study there may be an indication – if you’re young enough. If you’re older than 50 when you’re diagnosed the jury is still out.

Researchers at Henry Ford Hospital in Detroit, Michigan reviewed more than 8,200 cases where men were diagnosed with prostate cancer before they were 50.

The Study in a Nutshell

"When given the choice between surgery, watchful waiting or external beam radiotherapy, patients younger than 50 with moderately and poorly differentiated prostate cancers have better long-term overall and cancer-specific survival when they opt for surgery," says study author Naveen Pokala, M.D., an urologist with Henry Ford Hospital.

In 5, 10, 15, and 20 year follow-ups those men who opted for radical prostatectomy had a better survival rate than those who received external beam radiation (X-ray) treatment or chose active surveillance (watch and wait).

So tell your younger friends (more and more ‘young’ men are being diagnosed) to check out this study if they are diagnosed and BEFORE they opt for treatment. Long term survival rates keep getting better and better. I consider that pretty good news now that my post-treatment recurrent prostate cancer is at six years and counting. I try to count very slowly.

axman

Look for the Good News

My definition of health, happiness, and quality of life has undergone some significant changes over the past seven years. Since I was diagnosed with prostate cancer my health news has not been consistently good. There have been snippets of good news along with the progression of my recurrent cancer. This week I experienced one of those snippets of good news that has me smiling - at least for now.

Progressions - Good News has Many Definitions

• Seven years ago - the good news was that I had NOT been diagnosed with prostate cancer and there was no possibility in my mind that I ever would be! I was invincible.
  



• Six years ago - the good news was that my surgeon told me the tumor was encapsulated and the tumor and my cancer had been successfully removed. Survival is always good news.



• Four years ago - the good news was that after 37 external beam radiation treatments my recurrent cancer was gone - again - and my PSA was near zero. And the sores and weakness would pass.
  



• Two years ago - the good news was that I was accepted into a clinical trial that looked promising for slowing my ever-increasing PSA. Potential good news, anyway.
  



• One year ago - the good news was that I started taking two hormone medications that almost immediately started to lower my PSA. Good news, but no cure.
  



• One week ago - the good news was that my PSA was low enough that I could stop taking ONE of my hormone pills - for a while at least.



• Next month - who knows? As long as my definition of Good News is flexible I can keep looking.
  

So now I'm happy to be as healthy as I am for as long as I can. The rules and the reality keep changing. I hope I can keep up. I'm sure I can.

axman

Welcome to the Axman Blog

Real men with real prostate cancer are everywhere. But you already knew that. If you're over 50 you probably have noticed that many of your friends and co-workers have had one or more prostate cancer treatments. The good news is - prostate cancer usually progresses slowly. The bad news is - it often continues to progress even when you have treatment.

What has been happening with your cancer? Do you have an exercise regimen or strange dietary routine that might help others? How do you keep your attitude positive? Where do you get your information?




axman