A Life Changing Evening and My Speech

Some months ago I was fortunate to attend The Randy Smith Memorial.  During the event I was surrounded by amazing people from my industry.  Quite frankly their support was overwhelming and I learned, through those people, what it actually means "to give support".  

I had the opportunity to speak before this group [some of you have read the speech] and have finally gotten the video together.  Any quality issues in the video are solely mine and my software.

I'm not posting this because I think I'm any great orator [though I fervently believe in my message].  Quite the contrary.  I'm posting to show those of you that may be in the same or similar boat as mine, health wise or life wise, that there are people, people who may not personally know you, people who are perfect strangers, that are the people who support you.  This will be evident by their response while I "talked".

No matter how dark or desperate the moment may be.  Isn't it cool there are people like them out there?

Talk to you later

Is It Okay To Be Bitter?

I wrote the following on the train one recent morning fully expecting the words to end up locked away in my personal journal.  The words are short and my anger and bitterness bleeds through the letters thus my logic to lock them safely out of sight in my personal journal.  I thought that that anger and bitterness made me weak and whiny.

I don’t like to sound bitter and angry.  No one does.  But it dawned on me that everyone with cancer must feel that cold grey blanket of bitterness trying to chill the righteous heat of anger.  I’m willing to bet that anyone who isn’t a saint, and I don’t know any saints so maybe they aren’t exempt either, feels bitter anger when something terribly terrible happens to them. 

My non-professional opinion is that wearing the cold bitter blanket is healthy… occasionally.  Not only occasionally healthy but a natural reaction to some cataclysmic event that turns your life upside down. So I thought I'd share what my blanket looked like while riding the Green early that morning...  

In the morning, when it is still dark and I'm on the green train which is normally empty except for the homeless that seem to live on the train I sometimes feel so alone.  Alone except for the guy that sits next to me.  Sits next to me even though I give that rider dirty looks.  I hate him, but no matter where I sit on the train this passenger always sits next to me taking great happiness in the fact he has totally f----d my life and those who love me.  Alone I ride with the bastard.  Even as I'm informed in English and of course Spanish that the doors are closing my rider won't leave.  Lonely, even though I have this companion that rides with me daily.  As the wheels scream down the track in a banshee wail I can't seem to rid myself of this guy who insists on riding with me.  He told me his name...cancer.  So I stare out the rain darkened window.  Stare at my reflection.  Alone, but for my invisible passenger.

When you find yourself wrapping up in that bitter blanket don’t stay.  But also when you put that blanket aside don’t feel like you’ve done something wrong. I'm guessing you already feel undeservedly guilty.

Talk to you later

T.M.I.

We are mugged every moment we are awake.  We live in an age of information assault.  Smart phones making the highest of our IQs seem dumb, internet endlessly spewing facts, well maybe not facts, that we didn’t know we needed and YouTube vids detailing how to bathe our pre-adolescent hamster.   

So much noise to sift through to find the nuggets of knowledge we didn’t even know we needed.  By the end of the day….we fall asleep hoping our dreams won’t be filled with all that noise.

Information becomes, in general, knowledge.  Even wrong information can become important knowledge.  But, at what point does information become overload and leave you wondering did I really need to know that?  Can you be too informed?  Do you really need to know how to bathe that pre-adolescent hamster?  When does this onslaught become TMI?   

Being informed is one thing.  Being overwhelmed with information is a bad thing.

 I remember when I was first diagnosed my wife and I went on a terror of information gathering.  I would read one site that said eat alfalfa and another that refuted alfalfa and recommended dill, ginger and essence of bat gonad.  Still other sites maintained that irradiating your food instead of your lesions would produce results that would be effective only if all was done on a full moon in August.

During that early research I checked out a book that was written by an informed doctor and all chapters, from beginning to just before the last chapter were very informative.  I say just before, as the prelude to the final chapter of the book, was the doctor/author explanation of what the last chapter contained and some readers were upset and other readers were appreciative.  The final chapter of the book was about how someone with this disease dies

I read it.  Wish I hadn’t.  To this day, more informed, knowledgeable and prepared I wish I hadn’t read that chapter as in my deepest moments of scary scary the imagination dances through my mind.   My wife, when I tearfully told her I had read that chapter responded.   “&^@#@ why would you do that *&^%4?”  She was right.  Too Much Information.

Once, a loved and trusted person in my life during a discussion of subject that I can’t remember said. “In the winter if you don’t listen to the morning’s weather report will the roads be any less treacherous?”

At first I thought that comment seemed silly and not applicable to the discussion.  Then I thought about it a little and deduced that what was meant was hiding your head in the sand doesn’t divert the outcome. Then, then, I figured out why that statement was so wrong.

The mind is a powerful thing.  Think positive and positive things happen and vice versa.  It is like telling a child with a full cup of “water don’t spill it honey.”  What the hell?   The farthest thing in that child’s [sane] mind is spilling the water.  Now, by your warning, you just put the thought of the possible spillage outcome in the child’s mind. The weatherman has placed by his warning, the option of sliding off the road in my mind.  Too Much Information.

  

I’m not going to read that last chapter anymore, or search and read the site’s that bemoan my plight and my supposed helplessness due to a bat gonad shortage.  I will continue to be informed but I will not let the radio weatherman even accidently plant the seed that I may not be able to steer the course that I’ve set before me.  I will filter out T.M.I.

By the way, today my Onc said there are plenty more options then Bat Gonads left in my long future.

T.M.I.?

It's Just Underwear

It’s the first day of a new year and I suppose someone in my position should pen inspirational, motivational, and revelations learned in the past twelve months.  I could and some might say should because I have been inspired, motivated and learned much on this now almost 29 month journey.  So I’ve just convinced myself that I will pen such a…Nah.

As you may or may not remember my new not able to drive a car affliction is my inability to, well now, feel anything below most of my waist and if there is feeling it would be called numb.  As you can imagine this poses some interesting dilemmas other than just not being able to feel the brake pedal of my truck.  One of these dilemmas is underwear.

Yes underwear.  I have more than once tried to put on an additional pair of underwear in the morning.  Solely due to my inability to fully feel if I’ve already donned a pair previously I’ve caught myself with second pair in hand, and then, checking the bedroom for cameras and witnesses put the second pair back in the drawer.

I will freely admit I am one of those heathens that will wear the same pair of jeans for days in a row.  The true issue over years and years of heathenism are the objects that sometimes get stuck in the leg of the jeans only to be discovered the next morning.  In my experience the “stuckage” are usually dryer sheets, previous day’s underwear and, on the odd occasion, woman’s under garments.

Normally, while aiming the jeans at my legs, this “stuckage” would slide down the encapsulating jean leg and onto the floor.  Sometimes, while buttoning my jeans, the “stuckage” would become an annoying bulge pressing against my right or left calf.  This would cause the additional morning annoyance of unbuttoning and reaching down the leg to fish out the offending “stuckage”.

All instances annoying but manageable as long as I could feel my legs.  But now?  Heck, remember, I have to be very aware not to put on a second pair of underwear.

My wife gives me a ride to the train platform and picks me up.  The morning trip this time of year is in the dark and the departure is a whirlwind because it is very early morning and I’m addictged to the snooze button.  Out the door I go, she’s generally got the truck started and ready to go, cane in one hand my bowl of yogurt mixed with granola and agave in the other.

Backing down the drive way my wife says “What’s that?”

I glanced up from buckling my seat belt in time to see the headlights paint a dark morning object laying tin the middle of our driveway.  An object that was definitely alien to the driveway.

“Dunno, gonna miss the train.”  I mumbled.

A half hour later as the Green rattled closer to my station I received a text from my wife that caused me to feel inside the waist band of my jeans.

The text:  You left your underwear in the driveway.

Happy New Year and if you do something stupid…just laugh.  It’s just underwear.

Merry Christmas.

Short and sweet.

My family has always, on Christmas Eve, served everyone rice pudding.

Hidden in one of the bowsl of rice pudding is an almond.

The person getting the almond will have good luck for the coming year.

I GOT THE ALMOND THIS YEAR.

talk to you later.

It's More Than A Cane

A few months ago I found myself in Atlanta walking across a fairly nice hotel lobby.   

Hotel?  Motel?  

As a young lad I recall my parents trying to explain to me the difference between the two. 

I still don’t get it. 

  I think it had something to do with if you drove to it and stayed less than an hour…. no that wasn’t my parent’s explanation.

But a few months ago in Atlanta, my Cane clicking on the faux travertine lobby floor I made my way past paintings produced by the masters.  I fleetingly examined each and my untrained eye told me that these paintings, hanging in the lobby of a chain hotel motel were obviously originals.

Halfway across my fine art tour from A to B I hear, “Excuse me sir.  Excuse me sir.”

In the past, even knowing the beckoning was directed to me I would continue walking intent on my trip to  A and B.  In the past, I would wonder why someone was saying “excuse me sir” and think it meant ill.  In the past I was a different man.

I turned to where I thought the “excuse me sir” was coming from and saw a woman behind the hotel/motel reg…OK, OK it will be a hotel from here on out…registration desk.

I walked back across the lobby all the while, my eye realizing “hey these are motel paintings not masterpieces” and feeling temporarily chagrined.

I smiled at the seemingly nervous lady in control of registration and said “yes.”

She asked odd things about my cane.  She asked a lot of questions about my cane and was tremendously serious.  I really didn’t understand her intensity but due to my new life I’ve become more tolerant and inquisitive.

She asked if the cane was for the mobile impaired, seeing impaired, was it ADA approved, could I take it on commercial flights.  Finally she asked the big time question.  Why do I have a cane?

I explained that I have Cancer and it has made it difficult for me to keep my balance.

Tears, streamed and streamed and she thanked me for my time.  She explained that she was asking because her husband… well he had suddenly had become a hell of a lot sicker then I at the time including that very day.  One hell of a lot sicker.   

I felt so bad for her though.  She was so afraid that she would buy the wrong cane for her husband even though she is bright enough to run a desk for a major hotel/motel in a major city of the U.S. 

She didn’t know what cane to buy for her very very ill husband.

It makes me cry that someone can be so afraid they can’t think.

It makes me cry that I got to help and she has since gotten a cane. 

KARMA

Karma.  Is that word even in today’s vocabulary?  Perhaps I’m dating myself using the word but I was and am a firm believer in Karma or whatever word you want to use for what goes around comes around.

Karma swings both ways.  Karma can leave you standing in the middle of the dirt road crushed and bewildered wondering what just happened.  Karma can make you silently scream in the middle of the night "why?"  Karma can make you introspective and wonder what did I do to deserve insert word here? Hell, Karma can be bad mouthing your dishwasher and the next day all your appliances decide to rebel.  Karma is also the five dollar bill you find in the parking lot because earlier you held the door open for the lady who didn’t even say thank you.  Karma is the grocery store checker running after you to give you your change because months ago you told a different checker that she had given you too much change.  Karma is the balance of the universe.  Somebody even wrote a song about Karma that was instant and going to get you.

I have experienced both the reward and penalty of Karma.  In fact I believe that a facet of my illness can be directly attributed to Karma. 

As a young man I would hear women complain, both in real life and on television, about hot flashes.  On T.V. women like Betty White would even make jokes about hot flashes.  I always thought “hot flashes seriously?  You need to get over it.”  Not a whole lot of sympathy from me when it came to the mystical hot flash.  Hot flashes seemed like an excuse to me to not do something; drama to get attention; affliction of the mind certainly not a physical discomfort.  My less than sympathetic attitude years down the road would gain me Karmanic retribution.

Prostate cancer loves testosterone.  Testosterone is the high octane fertilizer of prostate cancer.  One of the treatments for the disease is to get rid of the testosterone.  In the old days they, doctors, would do this the same way you would your dog only in a hospital and not a veterinarian.  As you can well imagine this technique didn’t and doesn’t really sit well with the patient and marketing the procedure was  brutally tough. 

Today, they do it chemically but still call it basically by the same name.  In fact Prostate Cancer can and generally does eventually become what the medical profession terms Castrate Resistant.   

The particular drug they give me is called Zolodex [depending on your insurance there are others that are administered differently].  Every three months I go in to one of my oncologists for check up, infusion and implant.  The very kind nurse gives me some Lidocaine in the insertion area and once comfortably numb she takes a needle about the size of a railroad spike and implants a pencil lead diameter piece of Zolodex in the fatty tissue of my belly.  Scary the first time, but no biggy thereafter. 

This drug removes the ability to produce testosterone.  Removing a man’s testosterone has a number of predictable “manly” side effects.  You can guess what those side effects may be or look them up.  I suspect your guess will be correct but if you’re a man going through this there are non obvious side effects you may want to know about.

One of the side effects that varies from man to man is hot flashes.  In my case I have hot flashes that drench the bedding to the point my wife offers to change the bedding sometimes twice a night.  I have some sort of hot flash every night and can only recall since treatment started one night where I did not have a hot flash. 

I’ve had shirt drenching hot flashes during business meetings causing everyone to scream “Oh my god he’s got Ebola” as they run out of the conference room while I shout “no no I’m not contagious”.   

I have discovered that hot flashes are very real.  Hot flashes are miserable.  Hot flashes are neither of the mind nor a ploy to get out of something.  I own multiple zip up hoodies because you go from melting to minutes later freezing thanks to hot flashes.  Zipper up zipper down.  Zipper up zipper down.

I know there are men with this disease that suffer minimal hot flashes due to the hormonal treatment.  I know there are men whose days are seemingly a continuous hot flash.  I know I’ll never again begrudge a woman having a hot flash.  Instead I’ll ask her if I can do anything to help. 

In my case I’m pretty sure Karma is serving its just and wet retribution.  Betty, if you can hear me, I take it all back.  Joke all you want.

Talk to you later.