Being Aware of Prostate Cancer!

Every month I am aware of my prostate cancer, along with another two and a half million American men and millions more worldwide. There are many little hints to help us remember—scars, side effects of treatments, pills and injections, blood draws, scans, and endless medical appointments.

September is National Prostate Cancer Awareness Month (2014) and has been designated and proclaimed as a month to focus awareness, gain knowledge, and increase funding for research. A cure is still the goal and my personal preference.

Statistics can tell us a lot and help us understand the scope of prostate cancer. The median age for prostate cancer diagnosis is 66. So you’d think it is an old man’s disease. It is certainly more common in older men but many younger men are diagnosed and there are even several hundred young boys with prostate cancer (I was surprised, too).

Prostate cancer is the most diagnosed cancer in the U.S. with breast cancer in women a close second. But the most deadly cancer continues to be lung cancer, as it has been for decades.

Prostate cancer survival rates have increased greatly in the last 40 years. Thanks to research and the development of new and better treatments The five year survival rate after diagnosis was 66% in 1975, 88% in 1990, and is more than 99% today. I say Woo Hoo to that. I am sure that more than 99% of me has survived since my diagnosis in 2003.

Statistics don’t tell us everything. Statistics are averages, percentages, and points on a graph used to show information for a large number of people. Statistics can’t tell you what will happen to you. Any individual could be diagnosed at 35 or 95 or, most likely, not at all. If you are diagnosed and have incurable prostate cancer, you could have a very aggressive and deadly type, or a slow growing type that will never become a factor in your health. Remember, we are individuals‑‑not statistics.

Bottom Line

1 See your doctor, ask questions, listen, and mutually make a plan that works for you—it may take a few tries.

2 Talk to your friends and suggest they see their doctor. Early diagnosis really is the key to long term survival.

3 Participate in clinical trials if given the chance.

4 Donate a few bucks to prostate cancer research—it won’t kill you and just might help save somebody else.

axman

74 and Counting—Slowly

Another pretty good Year!

In my world, counting, walking, eating, and everything else is done slowly these days. Eleven years ago this month I was diagnosed with prostate cancer. It was just a few days after my 63^rd birthday. That was not my favorite birthday.

I’ve always tried to be an active and upbeat kind of guy (mostly) and had figured I’d probably live forever. But when I got my PC diagnosis my first thought was, “Gotta be a mistake,” and then, “I’m gonna die!” It wasn’t a mistake and I didn’t die. I have since adopted a more moderate approach to life. 

Of the many, many people living with incurable cancer of any kind, I am definitely in the luckiest group. The reality is that year by year my cancer has continued to grow gradually. The treatments and many different meds have significantly slowed the process but not without a smorgasbord of not-so-great side effects. But slow is good and I may still live forever.

I’ve lived longer and better than I thought I might. So instead of worrying about the few things that aren’t perfect, I’ll keep on as usual. My body and, more or less, my mind work well enough for me to travel, visit friends and family, work on the farm, read books, and write stuff like this. No complaints, no regrets (well, maybe a few), and I’m still waiting, along with many of you, for that elusive breakthrough cancer cure. Happy Birthday to Me.

axman

Getting Priorities Straight…or at Least Straighter

After my ‘Radiation Cystitis’ blog I received several notes (two of them published at the end of that blog) from other guys who had the same thing. They were supportive of me and hoped for a cure to their own cystitis. I too hope they are cured, and then they can tell me how they did it. Life goes on and none of us with radiation cystitis are in imminent danger of disaster--but blood clots can cause blockages that need to be treated. Guys who are at risk should watch for blood and clots and if they appear, get in to see a doctor ASAP.

On a sad and humbling note--one that tends to put things in perspective for me--three good friends have had much more serious medical realities than me in these past few weeks. A cousin I grew up with and continued to visit regularly died after a very long struggle with breast cancer. Another close friend was surprised to find out she has Stage 4 melanoma. And another life-long friend had an event called Transient Global Amnesia. A big chunk of his memory is gone, but doctors think it will return over time. 

Growing old is an adventure and a never-ending series of challenges‑‑as it should be. Whatever I might be complaining about this week pales in comparison to what some of my friends, and probably your friends, are living with. Many conditions of old age are treatable, some are curable, and others can be managed with pain killers, blood thinners, and dietary changes. I even feel a little comfort when my doctor admits that, “There’s nothing medical science can do to help you, so suck it up!” He tends to use more medically correct language, but the message is the same. So I’m resolving to suck it up with a glass or two of good red wine. Life is pretty good--even when I’m grumbling about it.

axman

I am Past My “Use By…” Date and then Some!

Surprise, surprise, I’m headed for another year.

Maybe I will accomplish something great this year…write the great American novel, make congress productive, or find a cure for procrastination. More likely, however, I will continue to have fun and enjoy every day.

Over the ten years I have lived with cancer I have tried, and mostly succeeded, to be active, positive, and moderately productive. I have written or co-written three cancer related books. The research and writing was actually a lot of fun and also challenging. My quite modest expectations of fame and fortune proved not to be nearly modest enough. I have no regrets. I’d probably do it again. And I just might.

Now for a moment of unabashed self-promotion. Two of the books are in print and available, really (the third is not yet published). Real Men Get Prostate Cancer Too and Cancer Clinical Trials can be found at Amazon and other fine book sellers. My next book will have a much catchier and more profitable title—something like, 50 Shades of Old and Grey, or Get Rich with Clinical Trials, or A Cure for Cancer—Guaranteed! Sound OK to you?

I sometimes wonder why I seem to be surviving quite well while others with the same diagnosis and prognosis I have, aren't. I’m not complaining about surviving, but there is that nagging question of “why me?” I know life is unpredictable and that’s probably for the best.

In 2014 I hope to do better at finding my glasses, phone, keys, and that half-full coffee cup. So it’s on, on‑‑to new adventures in traveling, spending quality time with family and friends, wandering aimlessly around the Arizona desert, gardening (mini adventure), and taking a nap whenever I want to.

The very best of everything in 2014 and may the cures be with you!

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

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

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

Getting Away Yet Again

The benefits of variety in life – at least MY life

Being in the same place and doing the same thing (more or less) day after day and week after week is my idea of hell.

Maybe it’s just my bad Karma, a highly regrettable character flaw, or just plain old fashioned wander lust. But when I’m traveling or camping or just doing something new and different and at least a little challenging I feel better. Mentally and physically – my aches and pains diminish (a little anyway) and my attitude improves (a little anyway). Don’t ask my wife to verify this; she’ll say I’m a grouch all the time.

Now we’re in Arizona for a few weeks of fun, rest, and a little work. When it’s over the next little adventure will begin. …and then the next one and the next one and the next one...

I suppose life would be easier if I was content to stay home and bloom where I was planted – but I’m not all that ready to be planted yet!

axman

Little Things are becoming More Important

Or it could be that’s all the energy I’ve got…

Maybe it’s just my senility kicking in but I’ve noticed that a lot of the good things in my life are really pretty simple and basic.

I’m probably getting a little more simple, too of course. In addition to my worldwide adventurous life (in my fantasies, anyway) I find that I enjoy:

• Taking a long walk with my wife (and maybe a dog or grandkid or friend from time to time)
• Sitting in the hot tub and sipping a hot mug of coffee at six in the A.M.
• Petting my pesky cat while she’s snoozing on my lap and I’m watching TV
• Nodding off in the recliner for an afternoon catnap – which doesn’t happen nearly enough
• Reading a trashy detective novel for a couple of hours of brain dead time

We still spend time with kids and grandkids, travel, go to concerts, jeep through the desert, and camp out in the mountains – we enjoy every minute of it. But the everyday low key activities (or non-activities) are probably just as enjoyable – and a whole lot cheaper. That’s got to be an upside to getting older.

axman

How Terribly Strange…

...to be seventy

With apologies to Paul Simon (Old Friends from the Bookends album 1968 when I was relatively young); it IS terribly strange. Never in my wildest dreams and fantasies did I ever imagine being seventy. Not that I planned an early demise; but being that old just never seemed real or important.

In my younger days (see, I sound old already) many of the seventy-year olds I knew seemed decrepit, senile, and sometimes couldn’t even care for themselves - at least it seemed that way to me. Just like my kids and grandkids think of me now – at least sometimes. Certainly not all septuagenarians are frail, but numbers count – retirement age, Social Security, and Medicare are based on age and mortality tables. The government is betting we die before we collect very much. Ha! I'm already collecting!

Various and sundry body parts don’t work as well as when I was a mere 50 or 60 but I’m still able to walk and chew gum at the same time – if I’m real careful. Strangely, I don’t feel old (except for those sore knees and arthritic hands and a slipped disc or two). I’m almost always able to find my way home from the grocery store; but just in case there’s a problem I carry a GPS in the car with a Go Home button. It doesn't hurt to be prepared.

When do I start feeling really old? When did you? Let me know. Tell me twice; I’ll probably forget the first time.

axman

You Sure Don’t Look Terminal

Prostate cancer doesn’t make you look very sick…

Whenever I go to one of my doctor’s offices (a disgustingly common occurrence) there will be people in the waiting room in wheel chairs, on crutches, holding oxygen tanks, coughing, bandaged from head to foot, or just sitting with a totally vacant stare. But I (prostate cancer and all) don’t show even the slightest symptom (unless you count gray hair and wrinkles)! I seem out of place around all those sick people.

When I’m around friends or in classes or even meeting people at social events and the conversation comes around to cancer (it always seems to among the old folks in my social circle) I answer their questions about my cancer. Then there’s always the, “Now way,” “Can’t be,” “You don’t look sick,” and “Are you sure” statements. Maybe if I was pale or limped or drooled (more)… I DO have a scar but don’t usually offer to display it in polite company or during casual conversations.

Most cancers, of course, don’t have a lot of visible symptoms – and in fact that’s not really so bad at all. Believe me, I’m happy with my invisible symptoms and hope I never get to the point when I’m obviously sick – even if it means not getting a lot of heartfelt sympathy.

axman

Us Old Men with Prostate Cancer are actually Living Longer

...but why?

If you ask ten doctors why their PC patients are living longer you’ll probably get ten different answers. You’ll get the same variety of responses from those of us who have the dreaded PC. We all have an opinion but facts are few.

Is it:

1. New medications and treatments?
2. Better diets?
3. Exercise for the elderly?
4. Positive attitudes?
5. All of the above?
6. Some of the above?
7. None of the above?

I don’t know for sure if I’m living longer than expected – certainly not longer than I expected. But then I’m a cockeyed optimist – mostly.

Long ago I decided NOT to take it easy and “go gently into that good night” (apologies to Dylan Thomas). I have never seen any evidence that being active and pushing your limits does any harm. And even if it does, it keeps life from being boring.

Life is always terminal so having a terminal disease doesn’t change things all that much – hopefully.

axman

It’s Just like Herding Cats

My experience with the latest and greatest prostate cancer clinical trial

When I use the term ‘prostate cancer clinical trial’ you probably immediately have visions of old men taking exotic pills, getting strange injections, donating copious quantities of blood and other fluids, having full body X-rays, and tolerating invasive body probes.

Not so - this one is different.

A group of men with incurable prostate cancer and their wives (who do NOT have prostate cancer) were invited to participate in a six month twice weekly closely monitored strength training class. Including my wife and me, there are 20 in each class and husbands and wives work as a team (what an original concept) doing a series of simple but challenging strength building and stretching exercises. The plan is to get stronger, fitter, and ultimately live longer - maybe even save marriages.

The idea of husband and wife working together (a long shot at best) is supposed to increase the possibility of continuing the exercises when the program is completed.

Of course getting 20 old duffers to do anything as a group and stay focused isn’t easy and the instructors/experimenters have their hands full. It’s a lot like, well, herding cats.

axman

Ask Lots and Lots of Questions

…just don’t expect lots of answers

I see several doctors every two or three months. I give blood, get weighed (and keep gaining), have my blood pressure checked, and am told that nothing has changed. It’s all pretty mundane and boring.

But, I usually have a list of questions to ask – at least a few. I believe it is my job to ask questions – it’s MY life. My doctors likely (at least in their minds) roll their eyes and say, “Oh no, not again.”

Is there anything new in meds or clinical trials?
What’s next when THIS med stops working?
Is it OK if I decide to run a marathon (fantasy thinking)?
What could I be doing that makes the bad cells grow faster?
How am I going to pay for all this?

Do I get answers? Sometimes. Sometimes the doctors ask me what I think. They may or may not listen to my answers.

If I can get them to think about what I’m thinking it just might lead to something in the future (my future).

My lifelong training and education has been to accept that doctors should know the answers and we patients should obediently and quietly listen and obey. Nope.

A friend of mine (who incidentally died of cancer) always said his preferred way to die was to be shot by a jealous husband. I’d prefer to be done in by global warming or even a charging elephant. I’m not sure just what choices I may have at the time.

In the meantime I plan to survive indefinitely and keep asking questions (my doctors may eventually decide on their own way to do me in).

axman

I Don’t Want to Live Forever…

…but just a little longer would be nice

Every part of our bodies wears out, short circuits, or ceases to function sooner or later. It doesn’t happen at the same rate for everybody. You know people who look and act years younger than their biological age – and you know some relatively young people who act old and decrepit. Of course we all see ourselves as looking younger than our real age…

Aging sneaks up on you. You’re joints get stiffer in the morning, you get a cramp after your walk, there’s a new pain in your shoulder, and don’t forget the arthritis in your hands. Then there is the need for stronger and thicker glasses every couple of years, a hearing aid (mostly its that others mumble more), and trying to save those few remaining teeth.

Your heart, your strongest muscle, seldom lasts more than a century or so, livers do better without too much alcohol (a little wine might even be beneficial I tell myself), and your lungs don’t much like smoke. And who knows when you might get hit by a bus!

We cope by making small adjustments, then larger ones; from there it's relying on medications, and often more serious treatments like surgery, chemotherapy, or getting new parts. As a last resort we look for miracle cures (as if surviving this long hasn’t been a miracle) – it all seems to be part of the plan.

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

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