It’s All Fun and Games Until…

Most of my blogs recount the long and strange history of incurable prostate cancer and me. And there are a lot more types of cancer and other serious conditions such as diabetes, heart disease, Parkinson’s, arthritis, and on and on and on... All these diseases can be nasty, painful, deadly, very expensive, and millions of us live with them. Doctors, meds, tests, assessments, evaluations, and our lives seem to revolve around those things we can’t control. 

So I have found some not-so-new and exciting things for us to worry about and help take our minds off our already incurable diseases for a while! You can thank me later.

You know, of course, that our greatest risk of injury and death is a result of our own everyday actions and choices. Mother always told us, “Most injuries happen in the home.” And Mother was right. I’m also throwing in the things we do outside the home just for good measure. What are those personal risks? Here is but a small personal sampling:

1                   Our farm has many ladders, chain saws, table saws, circular saws, hammers, machines to cut grass and till gardens, and trees to cut for firewood. We still have most of our fingers and toes but that may be only a temporary condition.

2                   When not playing with tools of mass destruction, we drive at least 10,000 miles a year and fly another 10 or15,000. Then there are those forays into the unknown in our Jeep. It has a winch, so what could go wrong?

3                   My wife has a firm and fast rule. “You may not climb onto the roof unless there is an overwhelming need such as leaves in the gutter, limb debris, a stray kitten, or a clogged fireplace chimney. Statistics tell us a major cause of death and injury in older men is falling from ladders or roofs. She probably doesn’t know that.

4                   In the house, there is the ever popular slipping on wet floors, falling down stairs, falling upstairs, running into cupboard doors not properly shut, falling in the bathtub (yes, bathing is dangerous, too), and spilling hot coffee on ourselves. Running out of wine late at night is considered a disaster but seldom results in injury—unless we drunkenly go out looking for more.

But there are some risks we do not and will not pursue. We are active and have a lengthy bucket list but some things are definitely not on the list:

• 1       We are unlikely to be attacked and dismembered by sharks (a plane crash or sinking boat could change that one).
• 2       We will resist falling into an active volcano (but one could erupt quickly in our own back yard).
• 3       We will avoid avalanches near the top of Mt. Everest (back to the plane crash scenario).
• 4       We do not intend to be stomped by stampeding elephants (attending cheap circuses not withstanding).
• 5       We are not at high risk of being hit by a meteor (probably not, except when we may go outdoors).

I hope I have given you a lot more food for thought and worry. There are no promises or guarantees in life so… we might as well have as much fun as we can for as long as we can—meteors and angry elephants be damned!

Axman

How Old is Old Enough?

Life spans have changed dramatically in our lifetime…

For tens of thousands of years human-like creatures were generally content (or not) to live 30 or 40 years (should they survive infancy). The oldest and most decrepit might make it to 50.

Then, amazingly and almost entirely in the last 100 years, average lifespans have rocketed to 70 or 80. There are millions of people living to 90 or even 100. That’s a big change and probably largely due to improvements in sanitation, immunizations, and the availability of medical care. Great news, right? Well yes, mostly. Mostly you say? Yes, mostly I say.

It seems (to me anyway) that our genetics haven’t kept up with the changes in lifespan. The human-like body was designed to work at peak efficiency for about 30 years and then go into a slow decline, followed, hopefully, by a quiet death as a respected elder—if some saber toothed beast didn’t catch up with you first. 

So our decline may still start at 30 and continue for another 50 or 60 years. Much of our life is filled with system declines and failures…memory failures, blood failures, lung failures, liver failures, bone failures, hearing failures, sight failures, digestive failures, and on and on. And I didn’t even mention such things as cancer, diabetes, Parkinson’s, Alzheimer’s, and other disease conditions. 

We all cope valiantly with these conditions and indignities—some more successfully than others. The world is becoming full of old declining people (like me) without the ‘respected elder’ status of earlier generations. Nobody seeks our wisdom or counsel. Nobody wants to hear about the days before NSA surveillance, WiFi, the Walkman, or even TV (there was a time before TV?). 

Knowing these facts full well, I am dedicated to continuing my gypsy lifestyle, spending my kid’s inheritance, and embarrassing my kids and grandkids whenever possible. So far‑‑so good. Who’d a thunk us humans could have so much fun for so long with parts that hurt, parts that don’t work, and parts that are missing. Carry on!

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

What Could Possible Go Wrong?

Or…What’s the matter with my bladder?

My February 21^st Blog talked about all the good results from spending part of our winters in the Arizona desert sun relaxing. All true. Still true. But shortly after that Blog the fickle finger of fate reared its ugly head (bad metaphor?).

Later in February, while still relaxing in Arizona, I had several bouts with what we (me and three different Urgent Care doctors) thought was a urinary tract infection (AKA UTI). High dose antibiotics (three different types) seemed to help for a few days or even a week but the blood and blood clots in my urine returned. I was getting worried.

Then one memorable night I had a total and painful urinary blockage. We took a long trip to the nearest Emergency Room our GPS could find and I had a large uncomfortable catheter inserted (which actually resulted in great relief). It stayed in for a week until I could see a local urologist. He removed the catheter (good to have it gone) and told me I did NOT have a UTI. His preliminary diagnosis was something I’d never heard of—Radiation Induced Bladder Cystitis. Nobody had ever told me that was a possible radiation side effect! Google it.

It turns out that men who have had Radiation Therapy as part of their prostate cancer treatment have a rather high risk (couldn’t find specific statistics) of “Radiation Cystitis.” What is it, you ask? I asked too. In a nutshell, if you had radiation therapy, whether or not you still have a prostate, the radiation might have damaged the inside of your bladder. And four or five or more years later (nine for me) small damaged blood vessels can break causing blood to accumulate, clots to form, and this can block the sphincter opening into your  urethra. You cannot urinate! Ouch!

And if it happens once it is likely to happen again and again. I had two more blockages shortly after the first one but none in the last month. Per doctor’s instructions I cut down on all the things that might irritate it, such as running, off road Jeeping, and hiking (all the things I like to do). Lifting, jumping, and riding long hours in a car can exacerbate bleeding, too.

Treatment and cure? Not likely

There are some treatments to help in really serious cases and you could always wear a catheter and urine gathering bag most of the time. There are single use catheters you can personally insert in an emergency (I have a few). I’m back home again and have seen my urologist, viewed the inside of my bleeding bladder in living color on a TV screen, and had a CT scan to rule out even worse things like cancerous tumors in my kidneys or bladder. Now I need to figure out what I can do and can’t do to minimize the risk of nasty clots while I get back to doing the things I like to do.

If you had radiation as part of your prostate cancer treatment you may be at risk. Talk with your doctor and look up the details online. Murphy’s Law seems to be alive and well! But as my blue prostate cancer wrist band says, “Never give in.”

axman

Surgery or Wait—the Latest and Greatest Study

It’s all about survival…

The results of an 18 year Swedish study were presented in the March 4, 2014 edition of The New England Journal of Medicine. 695 men from Sweden, Finland, and Iceland who were diagnosed with early stage prostate cancer between 1989 and 1999 were randomly divided into two groups. One group was to have radical prostatectomy and the other group was assigned to ‘watch and wait.’

In 2012, 23 years after the study began, the results were compiled. I will list actual numbers instead of statistical notations. You can read the NEJM article for more detailed statistical results.

Group 1. Men who had surgical prostate removal had a better survival rate.

Of the 347 men in that group, 200 had died by 2012 of all causes. 62 of that 200 had died from prostate cancer. The prostate cancer death rate was more than a third lower than in the ‘watch and wait’ group.

Group 2. Men in the ‘watch and wait’ group had a lower survival rate.

Of the 348 men in that group, 247 had died by 2012 from all causes. 99 of that 247 had died from prostate cancer.

Other Information

•   Men diagnosed and treated (group 1) before age 65 had the best survival rate. Men diagnosed and treated after age 65 had a survival rate no better than the ‘watch and wait’ group.        
• All men in the study were diagnosed using methods other than the PSA test. It was not readily available when the research began. Had PSA testing been available and used, it might have altered the outcomes.
•   Overall, prostate cancer death rates have dropped in the U.S.
•   The results of this study contradict the results of some earlier studies.
•     Men in the ‘watch and wait’ group whose cancer became more aggressive during the study were given needed treatment.

Bottom Line

Does this mean you should automatically have surgery if you are diagnosed? Of course not. Does this mean that ‘watch and wait’ is not effective? Of course not. Each individual diagnosis requires careful medical study, doctor-patient discussion, and an ultimate decision that best serves the patient. The Swedish study does show that in the case of this specific research population radical prostatectomy provided a better survival outcome.

If you are diagnosed, talk to your doctor, do your homework, and make the decision that seems right for you.

axman

Who Needs A Winter Break? We Do

We've found what works for us

Doctors, Nurses, pills, blood tests, X-rays, injections, poking, and prodding take up a lot of my life. I know that's necessary, but every winter we pack up Bertha (the big red truck) and escape for a couple of months to the remote desert of southern Arizona. We're so far out that it's more than 20 miles to the nearest Starbucks (OK, we actually bring along our own espresso machine).

There are more coyotes and javelinas than people in our neighborhood...just the way we want it. Now don't think we suffer too much--our trailer has electricity, water, sewer, and WiFi (the bare necessities of life). The sun shines almost every day and we consider 70 degrees on the cool side. Bubba (our faithful old Jeep) loves to crawl through the cacti, up mountains, down washes, and over, under, and around all manner of rocks. We hike, I run (slowly), we feed the birds and bunnies, and enjoy calm, quiet, and amazing scenery.
I almost forgot to mention our time sitting in the sun, reading, and sipping a cool glass of wine, or two, or... Hey, it's OK, nobody has to drive home.

If you think I'm trying to make you envious, you're only a little right. Come on down for a visit. We'll share.

The real bottom line for us is the mental and physical lift we get. Each year we feel rejuvenated and look forward to the NEXT winter. Home on the farm is great but being away from home (and in the sun) has special beneficial qualities. And at our age we need every little boost we can get!

axman

2014. So Far--So Good

New and better treatments abound--can cures be far behind?

There seems to be a new med that helps manage prostate cancer introduced every few months. Well, maybe not that often, but there have been a few. That is certainly good news for all of us with incurable prostate cancer. I'm taking one of the newer meds and my PSA has gone down to practically nothing (0.4 actually). That doesn't mean the nasty cancer cells have gone away, but they are growing slower--I may die of extreme old age, yet. There are many who may consider me extremely old, already.

I haven't heard that any of the new 'miracle' treatments are likely to lead to a cure, but the longer we all live (thanks to the new meds), the better the chances that somebody in a dank and gloomy laboratory somewhere in Lower Ebonia will have that 'eureka' breakthrough moment and cancer, like polio, can be wiped off the face of the earth. More or less.

Maybe I'm hopelessly optimistic but I expect a cancer cure in my lifetime. But then I also expected to have thick curly hair, a thin and athletic body, and 20-20 vision throughout my lifetime.

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

A Season to be Thankful, Again

Not original, but from the heart…

After nearly 150 blog entries, my good intention about writing something new and creative is mostly drawing a blank. But I always write something around the holidays to highlight those things I am thankful about and for. Schmaltzy is OK when you’re an old geezer like me.

First of all, thank all of you with cancer who have volunteered for clinical trials—ever! For some there is the hope that new drug research will lead to management or cure of their cancer. For many others, it’s the hope that participation now will help those with cancer in the future—the generation of our kids or grandkids. I believe there will be breakthroughs (not too far in the future) that will finally take a big chunk out of cancer.

Personally, I continue to be one of the luckiest guys around. I feel better than I have in a few years and I’m taking advantage of better health to keep busy and enjoy life. We split our own firewood, I ran a race in November, and we mow acres of grass all summer. We are fortunate to spend time with friends, kids, and grandkids. We have four grandkids in college, one graduating from high school this year, and there’s a precocious three year old (going on 20) grandson.

Carol and I spend a lot of time laughing—mostly at ourselves for forgetting things, dropping stuff, falling asleep in front of the TV, misplacing our cell phones, and all sorts of other age-related foibles. Might as well laugh. Complaining and grumping never seemed to work so well.

Spend time with friends and family. Enjoy the holidays and every other day. Life is too short to choose to be miserable.

axman

How to be a Cancer Survivor

(Hint: don’t die)

Maybe the most common term in the world of cancer (after, “You have cancer”) is Cancer Survivor. There are about 12 million survivors in the U.S. and millions more around the world. The term can have vastly different meanings for different people. In a nutshell, if you have (or had) cancer and are still alive, you are a Cancer Survivor. If you had cancer and are no longer alive, you are NOT a Cancer Survivor. Amen.

To some, the term is insulting or at best irrelevant. To others it is a badge of honor for fighting long and hard to survive. There are, of course, numerous types of cancer, many and varied treatments, and several levels of severity. And all the people in all these situations fall into the general category of Cancer Survivor. Surviving is good (at least that’s the way I look at it). But the term Cancer Survivor doesn’t differentiate between a cure and Stage 4 or a few skin cancer cells and an incurable melanoma. I am a Cancer Survivor who is a lot healthier than many other Cancer Survivors but not as healthy as some other Cancer Survivors.

When someone asks you if you are a Cancer Survivor, what do you say? Should you tell them more? How much more? Or just nod and say, “Yes”? Does it matter whether you are a breast cancer survivor, prostate cancer survivor, lung cancer survivor, or a survivor of a hundred other cancers? I think most people without cancer use the term as a sign of support and caring and probably don’t want or need a lot of information. What do you think?

axman