Is Sleep Really Overrated?

Not mine!

There was a time when I considered sleep a waste of time or necessary evil--there was too much I wanted to do. In my late teens and twenties I often went to school by day and worked by night. There would be days on end when I didn't sleep more than two or three hours. No sweat. I don't remember being sleepy or fatigued. Maybe that's a bit of selective memory, but I survived.

Years passed and I discovered that I needed more sleep to function--at least five or six hours a night. Late nights would find me nodding off the next day (hopefully not when driving or operating heavy machinery).

Now in my retirement years I find myself sleeping more and more, including a nap most days. Is it related to the medications I take? Or my body valiantly fighting the prostate cancer?  Eight or nine hours isn't unusual. Is that normal? I guess it is for me but some of my geriatric friends say they have difficulty getting quality sleep most of the time. Is that normal?

I guess I'm lucky to go to sleep so easily but there's always a fear that I'll need more and more. Of course getting up every couple of hours at night takes a little of that sleep time. I'd hate to sleep so much I missed out on meals.

axman

Every Few Years…

There are those pesky scans and tests

Because prostate cancer tends to go on and on and on (that’s actually a good thing), it’s possible and important to check out what’s happing internally from time to time. There might be tumors or lumps or spots or bulges or something else.

It was my turn. My PSA jumped up a little so I was scheduled for a bunch of blood tests, a bone scan, a CT scan, and we topped it off (or bottomed out) with a colonoscopy. Woo Hoo.

This all required most of three days ay my clinic of choice at OHSU (Oregon Health and Sciences University). That was not my favorite way to spend a few days but I admit I was a little curious about what they might find.

I doubt that the whole process makes my Health Insurance provider very happy.

After the tests there’s that gap of days or weeks before I get to know the results. I was pretty sure everything was OK, but the longer the wait the more I wondered.

Finally the results—everything (every test) was OK and normal (as normal as I could ever be, anyway) and I can breathe a sigh of relief and toast my good fortune with a glass of wine. I’d drink the wine whatever the results were, of course.

And in another few years…

axman

Confusion Reigns

…so everything is just about normal.

If you have had prostate cancer for a while you may have noticed that there has been a lot of published research in the past several years designed to clarify the diagnosis and treatment process of the disease. Had you been paying attention you would have learned (from respected researchers) that:

•      Guys who are healthy and have never had a PSA test should generally not be tested. There is no survival advantage and there is the possibility of over treatment.
•      Some guys should be tested with the PSA if they and their doctor think it’s a good idea (for example if it runs in the family). And similar research in Europe has shown there does seem to be about a 20% survival advantage to having regular PSA tests.
•          Younger men, newly diagnosed with slow growing prostate cancer, show no survival benefit from surgery. What about those with faster growing tumors or a high PSA?
•      Older men, newly diagnosed, show no survival benefit from surgery. Too bad.
•      Treatment of any kind may not show a significant survival benefit.
•      Treatment saves lives or extends lives for some (different researchers).

So, armed with this definitive scientific information, you and your medical team can confidently plan a treatment (or non-treatment) regimen to keep you as healthy as possible for as long as possible (don’t you feel more positive already?). I would certainly like to show a survival benefit. So far I’m surviving and that is definitely a survival benefit to me.

Every man’s experience with prostate cancer is different, every man’s choices are a little different, every man’s attitude is a little different, every man’s response to treatment is a little different, every man’s tolerance of medical side effects is different, but we all hope it works for us.

Nobody really knows what will work for any individual at any time. This is a good reason to be seriously involved in your own treatment. You know how you feel, what you want, what your side effects are, and what you are willing or not willing to do or tolerate.

axman

Happy Independence Day to Everyone

I have talked here several times about my heroes--many of them cancer survivors. But I also have another group of heroes--those men who wrote and signed the Declaration of Independence 236 years ago. They not only sparked the creation of our country, they also put their lives on the line. Each one of them knew there was a very good chance the British would hunt them down and execute them and probably their families, too.

Jefferson, Adams, and Franklin put in the words and John Hancock made sure his name stood out for easy recognition. Doing the right thing isn't always easy whether you're a Founding Father, cancer survivor, parent, partner, or citizen. Celebrate the good things in your life this 4th of July week.

Next week I'll get back to prostate cancer, the Affordable Care Act, politics, cartoons, and what's new in cancer treatment.

axman

Waiting for the Next Prostate Cancer Treatments

  

Will they come in time for my generation?

There are almost too many promising new prostate cancer treatments in clinical trials to count. A very few have been approved and many are in the clinical trials process. That’s great! I’ll drink to that!

Those of us who have been living with prostate cancer (or other cancers) for five, ten, or fifteen years can’t help but wonder how soon these new drugs will be available. And will they work for me? Everybody wants to live happily ever after. I sure do--whatever that means.

Of course, there will be a price to pay—drugs seem to be getting more and more expensive, there will be the ever-present side effects, and maybe we'll feel a little guilt that the new drugs weren’t there for previous generations.

Many diseases such as polio, AIDS, malaria, smallpox, and whooping cough have gone from fatal to curable or treatable in my lifetime. I have lost family and friends to some of them. Those people were born in the wrong century, wrong decade, or wrong place. And that will always be true.

If this sounds a little maudlin, I’m sorry. It’s just the way life is and the way science progresses. I believe there will  be more helpful treatments in my lifetime and I'm absolutely sure that by the time my kids and grandkids need a miracle cure there will be one for them. Keeping positive, believing there will be good outcomes, and living your bucket list seems a lot better than assuming the worst.

axman

15 More Minutes of Fame!

When celebrities get prostate cancer

If you pay any attention to the News Feeds about prostate cancer (like I do) you’ve probably noticed that every time a celebrity is diagnosed with prostate cancer that’s all you can read about.

Earlier this year it was Warren Buffett, at 85, being diagnosed and choosing to get treated (at 85!). It’s likely he can afford it but there were all kinds of articles and commentaries criticizing him for being too old for diagnosis and/or treatment. I’m thinking it is HIS choice. I sent him one of my books but haven’t received a thank you note yet. How you doin’ Warren?

A couple of months ago it was Ryan O’Neal. It seemed that his stage and treatment choices changed from day to day, but that was his story and he was the story.

This week it’s Tommy Chong (of Cheech and Chong fame) being diagnosed and touting his ‘cannabis cure’ treatment. For shame! Or, is it HIS choice? Or, is it any of OUR business? Maybe it’ll work and he’ll be our hero, man.

We (that’s the all-inclusive we) seem to have lots of opinions and ideas and strongly felt absolute conclusions about how guys with prostate cancer (if they are famous) should treat (or not treat) their prostate cancer. There must be better things for us to do.

axman

My Heroes

Heroes can be male or female and any age. But most of mine are well past retirement age.

Many of my heroes have serious life threatening diseases and still do things beyond what would be expected and they show strength and perseverance in the process.

For anyone with incurable cancer, the probable end doesn‘t sound very good. “Your cancer will eventually kill you—unless something else does first.” You’d think there would be a tendency to give up and just wait for the inevitable. Sometimes that’s what happens. But mostly—not so. 


In my experience, a bad prognosis can actually motivate someone to do something more, extra, different, and even feel more positive in the process (not the same as denial). What they do doesn’t always make sense to the rest of us—it doesn’t have to.

Call it a ‘bucket list,’ ‘wish list,’ or just ‘why the heck not list,’ it can certainly impact quality of life and just maybe even length of life—just maybe. Here are a few examples taken from what I see and hear:

• Being totally restricted to a wheel chair doesn’t have to keep you from going on that cruise or visiting Branson or Disney World.
•  Having the strength to laugh and joke about whether to wear the blonde, auburn, or brunette wig today (thanks to chemotherapy baldness), makes the day a little better.
•  Getting a tattoo—someplace that shows and will probably embarrass the kids (but not the grandkids) is a statement of independence—of sorts.
• Skydiving for the first time (safer than driving down the road, I’m told) can be a thrill or a way to overcome a long time fear.
• Selling the house, buying an R.V., and traveling as far as possible for as long as possible seems to be more and more popular. Watch out for old geezers in 40 foot motor homes (towing a Jeep).
• Finding old high school and college friends (with the help of the Internet and grandkids) and renewing long ago friendships is rewarding and kind of cool.

Facing your particular reality and not giving up, becoming amazingly resourceful, not letting an uncertain future dictate the present you can control, and not feeling sorry for yourself makes you a hero. Thanks for setting a good example.

axman

Prostate Cancer, Statistics, and YOU!

 More than 12 million Americans have cancer and about two and a half million of them are men with prostate cancer. That’s a lot.

There are new drugs in the clinical trials chain that have the promise of prolonging life and quality of life. There are controversies about high costs of trials and drugs and the ongoing PSA wars (trust me, the final verdict on testing or not testing is not in). There are statistics about survival advantage, impotence, incontinence, harm vs. benefit, and on and on. It never ends (which is probably a good thing in the long run).

But for us two and a half million, it’s a very individual thing. I know a lot of guys with long term prostate cancer and no two of us are getting exactly the same treatments (unless we’re in a trial). It all depends on factors like age, overall physical condition, speed of cancer growth, resistance to certain drugs, allergies, tolerance of side effects, insurance coverage, and some things I probably have never heard of.

The bottom line (according to me anyway) is to focus on your needs, talk to and listen to your medical team, look for the things that might help you, and don’t expect a miracle cure just yet. 

Whatever the ‘statistics’ and the ‘experts’ say, you are not just a number—ok, you’re actually number one. Any given drug or treatment will either help (100% effective) or not help (0% effective) you. So don’t get caught up in all the numbers hype. All those statistics might not have anything to do with what’s best for you!

axman

You Just Never Know What'll Happen Next

Since I was diagnosed with prostate cancer nine years ago...

I have tried to keep up with old and new treatments, support groups, and what was available and promising in clinical trials. After all, I want to survive and live the good life--and I figure the more I know the better my chances. So far, so good. And maybe someone else may benefit, too.

So several years ago I wrote a book and started this blog (you already knew that). Recently I have been fortunate enough to write another book (with my oncologist Dr. Tom Beer). It was actually published this month. Now comes the hard work--marketing and talking and social networking and all sorts of things I don't enough about. But I'd better learn.

If you're interested or even just curious, check them out at the Amazon site.

Cancer Clinical Trials and Real Men Get Prostate Cancer Too (2nd Ed.).

axman

And Now We're on Kindle!

My updated, Real Men Get Prostate Cancer Too 2nd Ed., is now available on Kindle! It's actually on the same site as the print version, but listed separately.

This is my first (but hopefully not last) experience with an eBook. It was not very complicated. We downloaded a copy just to see how it works--took about a minute.

Getting in touch with 21st Century technology has been an interesting side effect of writing books and blogs. There is much I don't know but I at least know the basics of texting and tweeting.

 And I'll ask my grandkids to help me understand even more. Hopefully us old dogs CAN keep learning new tricks!

axman