Sunday, January 30, 2011

DAY 1117 - Day 875 in Recovery Paradise

Old Dog Learns New Tricks
I recently shared an email with a fellow Tonsil Cancer survivor (we proactively refer to ourselves as survivors) regarding a special moment she recently had, watching her son receive the highest honor in Scouting - The Eagle Scout award and how proud she was.

This kind of shared Golden Moment is just the right medicine needed for those Tonsil Cancer innocents at the crossroads to choosing the dark path of radiation daily for two months and several Chemotherapy treatments or letting fate take its course.

You are generally feeling  pretty good at the moment when you are diagnosed with Tonsil Cancer, but to fix you the doctors have to make you feel really, really bad for about six months  The gamble is that you are asked to trade one half of a year of your life for more time on the other end and pray that it works). 
You are first fitted for a full faced, highly claustrophobic, heavy plastic mask to hold you down during precision radiation treatments (don’t move for fifteen minutes – fairly easy task as the rest of your arms and legs and body are also strapped down).

Your hair falls out, you can’t swallow, your saliva glands and taste buds are destroyed and you can’t even swallow water (which tastes like moldy swamp water anyway). 

You lose 30 to 50 pounds, even if you don’t have it to lose.  You can’t eat, so you have a surgery to install a feeding tube into your stomach, so you can hold your arm up like the Statue of Liberty for about 40 minutes (try it – bet you can’t do it) letting gravity drain two or three cups of Ensure, or the like, into your stomach to keep you from starving to death…oh wait…you get to do this eight times every day. The upside is that is a surefire weight-loss program.

In between feedings, you shuffle around like you are a hundred years old.  Because your head is being radiated, your sense of hearing, sight and balance gets whacked.  If you are lucky (unlike what happened to me) you won’t fall down a flight of stairs, on your back, in the middle of the night, because you thought you were stepping into the bathroom. 

That sort of opportunity definitely enhances the Cancer treatment experience (that is what I got for saying before I fell- “Well, at least it can’t get any worse that this.”….just to show that you never get too old to learn something, I learned to shut up after that…trust me, things can always get worse).

Newly diagnosed Tonsil Cancer innocents (I never liked the term ‘victim’) often wonder if what they are about to go through will be worth it.  I have had people say to me, after I (in detail) described the six month endurance run through Hell to keep Cancer at bay (you only get the Iron Man/Woman title after you make it through), that they wouldn't go through that.  They said they would just let the Devil take its course.

That is an unfortunate example of choosing to be a ‘victim’.  One can choose to be or not be the ‘victim’.  It is our decision as to how we handle the stones thrown in our path. To me, it is similar to saying that, faced with the ordeal of fixing a mouthful of really bad teeth, you would choose to let all of your teeth rot out, rather than going to the dentist and having them pulled and replaced with false teeth (perhaps the analogy would be clearer if I added: without Novocain...ha).  A year from now, would I rather be eating Filet Mignon and peanut brittle or sucking mush over my gums?

Project out a year; where do we want to be; having gone to our deathbed full of regrets or experiencing things like watching your child receive the highest honor the Scouts can bestow?

Every golden moment for all of us going forward after enduring the very invasive, but necessary procedures to do battle with a Tonsil Cancer diagnosis is blessed with the enhancement of knowing that if we had not chosen the S & M masked radiation/chemotherapy experience, we would most likely not be here today to enjoy another glorious sunrise or Golden Moments yet to be shared.
Sharing a post treatment Golden Moment is the lantern we hold up, offering light and hope for Cancer innocents still on the opposite shore or halfway across in a leaky little boat, tossed about on dark and stormy seas.   Shared Golden Moments from Cancer survivors provides strength to those that still endure the darker moments, providing a sign of the rewards waiting for them on the other side.  A shared Golden Moment is a great visual to inspire us all to hang on - Never Give Up - and to gather as many of these moments as we can cram into our new gift of extended time.

Note: the choice we make to voluntarily endure the boat ride through Hades and 'cheat the reaper' for one more turn, returns rewards, not only to us, but more importantly, to those around us if we wish it.  Even if it is for just a few more months or years.

"Like tomorrow was a gift,
and you got eternity,
to think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?"

... Live Like You Were Dyin' - Tim McGraw

Here is my most recent Golden Moment to share.

Recently, my seventh grade daughter got "called up" to the big high school orchestra because of her skill with the cello (Principal Chair/Cello for the Intermediate School Orchestra), for a tour bus trip to Disneyland, to perform on stage and cut a CD this coming Friday. Is Dad taking a vacation day, driving ten hours down to Anaheim, buying a day pass to Disneyland, and stand in the front row at the concert with the movie camera?  Absolutely! 

This will be a Golden Moment I would not have had, if I had chosen the weaker course of action in 2008 and not gotten fitted for my custom claustrophobia mask, had two months of radiation and chemotherapy treatment and six months of recovery.

Will this cherished Golden Moment extend beyond me?

My gift to my daughter, from all of this, will be her being able to look up from her music stand, on stage in front of a huge crowd in Disneyland (she is still young enough to know this is way cooler than Carnegie Hall) smiling at her Dad beaming with pride, and actually SEE me in the front row of her momentous concert, rather than having to say "I wish Dad could have been here to see this.  He would have loved it." 

I won’t be able to see all of her future moments, but I won’t miss this one.

Our choice to brave the exorcising process to rid ourselves of the Demon Cancer irrevocably shows our strength of character and provides not only benefits to each of us, but more importantly, to those that care about us. 

Are they proud of us?  Would they think less of us if we just gave up and did not choose to take our little wooden sword into the battle with the windmill (thank you, Cervantes)  to fight for our life? Yes and Yes.

As we are proud of our loved ones as they work hard and receive accolades, we admire them not just for the reward they received, but more importantly, for the lessons they learned in the process that brought them to that moment.  The admiration and pride we feel is not for the trophy, pin, or certificate.  Rather, it is for the process, the perseverance, hard work and character they showed, without giving up and just going to the mall with their friends.  It is knowing they will use this process they experienced for all of their life and will be a better person for it, long after we are gone.

The trophy is but a three dimensional reminder of what one can achieve when we don't quit, take the easier path and "let life just happen to us."  Our fight is their example, as well as an inspiration to our friends and all those we come into contact with.  That is our silver lining to the cloud of Cancer.

None of us will live forever.  We can however, choose to not go quietly into the night.  Which would we rather have as our legacy - curling up and passing into dust with a whimper or fighting a glorious fight, snatching our little victories here and there and persevere to the bitter end and arrive at our final destination with character? I choose the latter. 


"Fight the unbeatable foe, Strive with your last once of courage to reach the unreachable star.”  'Don Quixote'/Cervantes

Monday, January 24, 2011

DAY 1111 - Day 869 inRecovery Paradise

As I followed the dark Cancer path lit by others ONE THOUSAND ONE HUNDRED AND ELEVEN (DAY 1111) days ago, I have been honored by a fellow struggler, with his first foot on that same path, acknowledging the candles I left behind, as I moved towards the sunrise of a reclaimed life.

I got this email today.

Hello Robert-

...been reading through your blog as I'm about to launch into the same treatment route you have described so lucidly, forewarned is forearmed!  We share a number of things in common, left tonsil cancer....left lymph node cancer, atrial your expose has been more than valuable, knowledge dispels fear. I start on chemo this Wed then another session 3 weeks later followed by 6 weeks of 5 days radio therapy - my diagnosis was confirmed on 10 Jan after an exploratory biopsy on 3 Jan.  Like yourself I am surrounded by professional medics in London and a good support group so I walk forward optimistic about my ability to see this through. What I do not easily appreciate is the extent to which the throat becomes an impediment - I will take the PEG route which I see you advocate.  I am up to day 64 of your blog and would just like to say thanks for having taken the trouble to write it up, it has been invaluable to my wife and I.  I am age 64 and have spent most of my life traveling the world - now semi retired living in Epping Forest close to London.

best regards, and thanks again

xxx return email - 

Thanks.  Writing was a good way for me to stay focused on the solution ahead.  Each day that I wrote about feeling a bit worse than the day before, I knew I had not hit bottom.  I remember the day 64 well.  I just about broke my butt falling down the stairs in the dark about then.  It actually took my mind off the big picture...ha.  When there was three days in a row where I blogged about feeling a bit better than the days before - signaled I had bottomed out and was starting a new climb out of the dark. 

Surround yourself with positive motivation and maintain your sense of humor and what you are grateful for.  Even with all this, you are so much better off than tons of people around the world;  memories of a well-lived life, travel, the means to secure treatment, a support system... think of entire families that were born, lived and died in the train station in New Delhi - living on a cardboard mat, etc.

Your appreciation of your "second turn"  will be magnificent.  The depths you go in your treatment and recovery is just an indication of how high you will go when you pop out the other side of the rainbow.

I am now at DAY 1111 (how cool is that - thanks for your email - you have inspired me to post again in a minute to commemorate the 1111 day) and Day 869 in Recovery Paradise. 

Still a bit of a dry throat (I think I will get to keep that forever as a slight reminder of my experience)...but all in all I have 100% of my strength back and 99.9% of my ability to eat anything.

Life is good (actually better, as my level of appreciation for the little things has accelerated) and it will be for you too.  This experience was actually a GIFT for me and I hope it will be for you too.  At my age, I have experienced the quantity and now I am experiencing a quality and gratitude level that is very different than I have had in the past.  I have traveled all around the world and didn't appreciate the places and things I saw and did as much as getting to watch yet another Sunrise, listening to my daughter play the cello tonight or noticing my wife's look, with love in her eyes.  I am a very lucky man.  I got a second turn.

I am glad my recounted posts are a help.  There is a light at the end of the tunnel.  It is the sun rising on a fantastic second part of your life.  Stay positive.  Remember always, at your darkest hour, you are still more fortunate than many, who would trade with you in a heartbeat.  You have a great life ahead of you.

Note: I loved traveling to London.  I could haunt the old bookstores and pubs forever.  That is where I secured my leather-bound Dickens and Original Strand Magazines with the Arthur Conan Doyle stories.

" For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way.  Something to be got through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life". 

 ~Fr. Alfred D'Souz


Sunday, January 2, 2011

DAY 1089 - Day 847 in Recovery Paradise

It is true that circumstances occur in each of our lives that we would not have chosen and cannot control. Cancer, accidents, weather, the economy, taxes, or the passing of a loved one, are all pretty much beyond our ability to personally control. We do, however, have a great deal of control over how we allow these uncontrollable events to impact our precious remaining TIME and of the duration of the moments in which we allow external events to affect us.

William Ernest Henley (Invictus)

"It matters not how strait the gate,
How charged with Punishments the Scroll.
I am the Master of my Fate,
I am the Captain of my Soul.

Some of us walk out of a doctor’s office with the crushing, matter-of-fact, very cold and clinical words: “You have Cancer” echoing in our heads. We just got elected to a very exclusive club you wouldn’t wish upon anyone. 

Just as not everyone died in the internment camps in WWII, not everyone dies of Cancer. The odds are that the ones in those camps that successfully fought off the foreboding negative circumstance stood a better chance of survival than those that gave up and discarded hope. Being diagnosed with Cancer is no different. The greatest medicine you can treat yourself with is the proactive positive use of your mind. 

Everyone will die.  A fellow Cancer warrior inspired me with "I choose to beat Cancer and live long enough to die of something else".

Regardless of the length of time or circumstance, we should live our life with well-crafted intent. We should intend to be happy and satisfied. We should readjust our goals daily. We need to constantly fine tune our goals and plans to get that 'radio dial signal' of control to be just right. All musical instruments need to be regularly tuned to keep the sound the way it was intended. We should re-tune our direction daily to be the instrument for which we were intended.


“So often we allow life to dictate to us how we live and what we do. We become a victim of our own circumstances with no purpose, design or intent. Living a life of intent means we take charge of our lives and direct ourselves to whom and where we want to be. Intent won't just happen it takes effort and commitment.”

Every golden moment of every given day has its value. How we decide to live that moment is truly ours, regardless of the circumstance of environment around us. 

Great musical works of art were created by Jewish composers while interred in concentration camps during WWII, while others around them lived their days in dark despair. The common man would never wish these conditions upon another human being,  however,  the unconscionable environment was the same for both. The deciding factor was one of human choice, living by intent, exerting personal control over seemingly uncontrollable circumstances.

Robert Frost

The Road not Taken
Two roads diverged in a yellow wood
and sorry I could not travel both
And be one traveler, long I stood
and looked down one as far as I could
to where it bent in the undergrowth;

Then took the other, as just as fair,
and having perhaps the better claim
because it was grassy and wanted wear;
though as for that, the passing there
had worn them really about the same,

And both that morning equally lay
in leaves no feet had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I --
I took the one less traveled by,
and that has made all the difference.

Sometimes a seemingly impenetrable roadblock like Cancer will appear in your chosen path. Accept the detour. Denial of truth does not change the truth.  Truth, by the way,  is only what we perceive it to be. Perceive this new truth as nothing more than an unplanned detour in your intended path. Make it your new path by choice, not by denial or submission. Enjoy the scenery along the new way. Acceptance and awareness and appreciation of the unappreciated ‘things’ you do have can be your gift, the silver lining in the cloud of Cancer. Focusing on what you don’t have at this point in your life will not make the circumstance disappear. You may discover that waiting for you on the other side of treatment is a life full of a renewed appreciation for the moments you do have.

When we embrace the fact that the most important "things' in our life are not really not things at all, we can then fully appreciate the daily gifts that are around us. Control the things you can. The number of them is staggering. The things we cannot control are few.

With reverence and apologies to the "Serenity Prayer", I offer an updated version sent to me by a friend...

God grant me the serenity
to accept the things I cannot change;
the courage to change the one thing I can;
and the wisdom to know it's me.

Seek out the positive parts of your new path. Open your eyes to your new reality. Engage with the value of the new path. Check out the positive scenery that was probably there all along. On every roller coaster there are people crying in fear, sobbing "Make it stop". Seated next to them are people on the same ride with their arms thrust high in the air, whooping it up, having a pretty good time.

The path of life after being diagnosed with Cancer is a very scary ride. I am on it to the end. There is no getting off this path for any of us, with or without illness, until it comes to a full stop, seat backs up and the tray table folded into the seat in front of you. Then, and only then, do you get to unbuckle your seat belt and depart the ride.

Although my ride has unexpected and unasked for heights, drops and loops, I still have two choices. I have the choice to bury my head in my hands and cry "why me" or I can seek to find peace and pleasure in the view that has all the twists and turns while I still can. 

After all, we all only get one turn on this ride.