Worried Sick..?

Yesterday morning I awoke to a sunshine not seen in a month and spring birds singing their hearts out in welcome to said sun.  My disease wasn’t really rearing its ugly morning head and really, I was fit enough to hop out of bed.  Except for the incredible grey weight on my heart that caused me to hate the sun and every chirp of the spring birds felt like a scalding nail through my forehead I was in fine fettle.

This was new.  As far a cancer was concerned it was a good day.  I felt well except for my soul and mind.  Two things I take better care of than my body.  Finally I got out of bed and sat down in the house office and went to work. 

 Every minute the grey cloud forming increased and oppressed me leaving me feeling like I never have before.  I actually closed the shades so I didn’t have to look out the window into the sun washed front yard.  I had no clue what was happening to me.

I recognized that I was perhaps depressed.  The day before there had been some major disappointments, along with the normal worry, stress, every day, work, cancer and life.  I've dealt with those things everyday [sans disappointments] why was today any different?    

Perhaps because it was Spring, and, as a friend of mine mentioned today the world goes on without a care.  I don’t know I’ve never been attacked by my mind.

As the day progressed I started to become physically ill.  Ill not involved with my cancer but a product of my “grey”  mind until reaching the apex of the day where humiliating embarrassment could be the result of straying more than ten feet from the bathroom. 

I have to think about the why some more.  I don’t know what yesterday was but here’s what I do know.  There is a reason why there are phrases in the English language like “worried sick”, “sick with grief” etc.  The mind, our minds if we let them, can make us physically sick just like I let mine do yesterday and I’m going to work, no matter how worried, disappointed and ill tol never let “yesterday” happen again. 

If I’m wrong then I’m none the worse for wear.

Provenge tomorrow.

Four Months

Being the week of my second Provenge treatment I was going to write about the mechanics of the treatment for those of you that are considering Provenge.  However, after hearing some comments and seeing some reactions about the cost to benefit ratio of Provenge I’ve decided not to write about the mechanics but, instead, the emotion of the treatment.

Not to be argued the treatment is expensive as hell.  What desperate attempt to lengthen one’s longevity treatment isn’t?   Yes, we men who have this treatment are, short of a miracle, terminal.  Yes, for those of you that still feel immortal the return to dollar ratio probably makes no sense.  I get it.  A median increase in longevity of four months seems trivial.

That reaction bothers me.  I think it bothers me most because so many people have no issue with wishing four months to quickly pass.  After all most of us measure time in terms of our mortgage.

I agree, four months will, sadly, pass by much too quickly.  Four months is a blink of an eye, a window of opportunity for a cancer cell, nothing.  Four months is a negligible wisp of time.  Wrong…

I can calculate the cost to benefit ratio of this treatment simply like so:

In four months I can see 120 sunrises and 120 sunsets.

I can go to the cabin with the love of my life, oh let’s say, at least 4 times.

I will hear my son joking at least 120 times.

I will get to kiss my wife at least 240 times.

I’ll get to hold her hand at least 120 times.

I will hear my daughter laugh a minimum of 16 times,

My grandson and step granddaughters will be around at least 16 times.

I’ll receive a hug from my best friend well more than 90 times.

I will help someone less fortunate than I at least 4 times.

Research done on me will cure the guy coming up behind me.  If not him then the next one.

Wind, Crows, BBQ, My co-workers and the many things I missed and didn’t list at least 120 times.

My heart will be 12,096,000 times [if I did the math right]

All of that and more in a median four months, we should calculate the cost.  Let’s see just this partial list alone is 12,096,971 events.  Basic math makes each of those events coldly worth .007 cents each.  Throw out the statistical skewing heart beats and you get about 87 bucks per event.  I’d pay 87 bucks in a heartbeat to be at the cabin.

Take it from someone who no longer says “thank god it’s Friday”  Four months can be a lifetime.

We are thinking about you C

Wow Laughter Is Medicine

My insurance, surprisingly, gave the full speed ahead, on a relatively new and definitely extraordinarily expensive treatment for guys with this crappy disease.  It has been proven effective.  I and many others for that matter look forward to its success but that doesn’t belay the trepidation I’m having toward tomorrow’s opening round.

Some demonic scheduler wants me, with my driver, at the main admitting desk tomorrow morning 6:00 A.M.  That’s cruelty of having to get up around 4:30 A.M.  I’m not sure that time is even on my alarm clock.  Tomorrow I’m being out fitted with a Hickman Trifusion Catheter.  Why this has to take place during the wee hours of the morning is beyond me but I digress and perhaps bitch too much.

This installation is the only part of the treatment that I have not done yet on this journey I’m on.  The other two processes involved are lengthy and boring.   But, I really shouldn’t have watched the You Tube installation training video.  I’ve been blessed with a vivid imagination that is at times a curse and this is the fuel for my trepidation.

Today, trepidation in hand, I walked into the house and my office only to find a very large box sitting in my office chair.  Surprised and unable to imagine what could possibly be in the box I read the shipping label;  Provenge Comfort Kit.  I still couldn’t imagine what was in the box.  I did think so this is why the treatment is so expensive the Pharma Company sends its clients gifts in large boxes.

I put the semi heavy box on the kitchen table and we tore into it like kids Christmas morning.  Inside was a letter suggesting for my comfort and care givers boredom to take this gift to pheresis and infusion appointments.  Underneath the letter was nice back pack with a pull out handle so you could let the pack tag along behind you like a puppy.  Stenciled across the back of the pack in the latest Pharma color, Tango Mango this year, was the Provenge logo.

I won’t go through the whole inventory of the pack but each pocket had some little “treasure” in it.  It was fun “discovering” what goodies they had packed each with the Provenge logo.  I laughed and said “Isn’t cancer fun?”

Cancer isn’t fun.  Not at all.  I’m also not naïve enough to not understand a marketing ploy if I’ve ever seen one.  But for ten or so minutes we didn’t think about our trepidation and we laughed like little kids.  Proving, what they say about laughter and all that is true. 

Perhaps even in the bleakest of circumstances there is something to laugh at and if there isn’t then perhaps we should find something to laugh at.  Hell, no matter the circumstance we should laugh every day.  I know that's my new goal.

Talk to you later

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.