The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

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Thursday, November 15, 2012

Life after the "R" word

Before I say anything, there is one thing I must say.

Thank you.  If you read this blog at all, you know who you are and why I said it.  Thank you.

Some moments of our lives stay with us forever.  Some of them on a grand scale, affecting many, some of them are extremely personal moments that you take to your grave.

And some of them you can't help but share.

There are two of them I want to talk about.  One of them many of you already know and one that I will share with you now.

Many of you already know that I've been a cancer patient for almost a year now.  You've been largely responsible for me being able to sit here at this keyboard.

I am Vertical and Verbal....well, sort of verbal.  The radiation treatments have altered my voice to somewhere between The Godfather and The ever-famous Muppet, Animal.

Bear with me as I share with you my jagged thought processes.  I didn't say I was "fighting" cancer or "battling" cancer.  Those terms to me are misnomers, assigned to patients who need the illusion that they take an active part in their treatments.

In My Mind, there is nothing "heroic" or "brave" about my ordeal with cancer.  It was more of a Scarlet Letter, as the trach jutting from my throat symbolizes...a testament to a life foolishly spent not taking care of myself.  Smoking to excess, drinking way more than I should....a diet that a junkyard dog would walk away from.  Those of you who had to endure my Keynote address to the Texas LinuxFest a couple of years ago saw, or heard the onset of the disease.  The inability to catch my breath between sentences, the jerky delivery and long pauses.....for that I apologize.  I allowed My Ego to accept the offer while My Inner Self knew I should have turned the opportunity down.


In My Mind surviving cancer is simply doing what you are told to do.  Go to your treatment appointments, follow the doctors instructions and cut away the behavior that caused the cancer in the first place.  Sure the treatments suck.  The pain and nausea is more than modern medicine can remedy with the pills they give you to treat it.  Your physical appearance becomes the reason you don't leave the house.  My weight fell from 205 lbs to 146 lbs in less than two months.  Between the cancer and the treatments, I looked like an extra from The Walking Dead.


Many of you, with the best intentions and love, suggested that I seek "alternative" methods to treating my cancer.  Steve Jobs died from an early-detected form of pancreatic cancer...one of the few types of pancreatic cancer that is treatable.  He died, having more money than 99.9 percent of any person on the planet.  He died because he shunned "modern medicine" during a critical time...a time when conventional treatment could have saved him.  He himself stated as death closed in on him, that he regretted not being treated by "modern medicine".

It was this report that solidified in my mind, that the alternative treatments I was considering would be considered no more.

And as if I have not diverted from my original intent enough already, let me answer a question that has been posed to me a few dozen times in private emails and texts.

"Did you quit smoking?"

Uh, yeah.  I did.

Some of you admitted to being long-time smokers and asked me how I quit.  Smoking is an insidious addiction, reportedly more hard to beat than even the strongest heroin dependency.  I will attest to that.  It was even reported that the actor Michael Douglas continued to smoke, even after the doctors had beaten his cancer.  The same Stage IV cancer by which I was diagnosed.    Even early on, I knew in the back of my mind that I had cancer.  The fact that I was uninsured kept me from seeking help and through all of the early signs, and even on into the later ones, I continued to smoke.  Chantix, hypnosis, the patch, the gum....none of it helped.  Let me tell you what did.

I admitted myself to the hospital via the emergency room.  By that time, the tumor was blocking 80 percent of my airway and I was gasping for breath.  The attending immediately admitted me and called in a local ENT, who then informed me that he was going to perform a tracheotomy.  As he ordered the surgical instruments, he informed me through his mask that I was not to be anesthetized, nor would I be put out during the procedure.  I must be fully conscious during the operation to prevent choking and to insure that I was able to swallow on command and hold my breath when ordered.  I was fully awake as his scalpel crunched through skin and cartilage.  I saw the huge amounts of blood being siphoned off as he repaired the torn tissue from my coughing during the procedure.  I remember it all, every cut, every searing, burning slice he took on my throat.

"Did you quit smoking?"

Yeah, I quit smoking, but it wasn't due to that experience alone, although it had much to do with it.

Thousands of people are responsible for me sitting at this keyboard today.  Firstly, the doctors Courtney Sheinbein and David George, both Oncologists from Texas Oncology who took on my case knowing I didn't have a dime's worth of insurance nor the money or means to pay them.  They are the Doctors who over-rode the initial diagnosis and prognosis.

Terminal Stage IV throat cancer.  Take him home and make him comfortable for the time he has left.

And Dr. Peter Scholl, who after hearing about my case during the fund raising for my treatment, took me on as a patient.  Dr. Scholl has taken on my care and is a specialist in the head and neck surgery deemed necessary for my survival....all at a reduced cost or pro bono if necessary.  Dr. Scholl now "quarterbacks" my care and is the pivotal physician in my case.

My eternal thanks also goes out to Dr. Santam Chakraborty and Dr. Vinay Kumar, both Dr's from India who specialize in cancer treatment and/or the surgery that was deemed necessary.  They both offered me treatment at no or low cost in India.  It was my number one option for quite a while.  I count both of these men as my friends, even though I have yet to meet either of them in person.  Yet.

And you....

Those of you who heard I was in need of immediate medical intervention if I was to beat the monster that raged within me.  You that donated over fifty thousand dollars so that I have the money needed for surgery and treatment of my cancer.  That money sits in Trust, awaiting the final transfer order to the account that will administer payments for my treatment.  It's taken longer than we expected to find someone to do it but Pastor Jeff Ripple did indeed take on that task and we are days away from being able to pay some bills.

I said treatment.  Surgery has been shelved, at least for the time being.

I was ordered to Dr. Courtney  Sheinbein's office on the 2nd of November of 2012.  It was an apprehensive moment for both Diane and myself.  This visit was to discuss the second PET scan I received a week before.  It was the previous PET scan that had deemed surgery as necessary if I were to survive.  Dr. Scholl took another route, which has in turn both saved me immediate surgery and has saved my much-scarred larynx from the knife.  While they are expensive, they have saved me in more ways than one.

Dr. Sheinbein is a hard man to read.  When he walks into the exam room, you cannot tell from his face or body language what he has on his mind.  Diane and me both looked at him carefully as he entered the room.  His normal smile and cool demeanor was no different than it was the last time I saw him.  The same way he entered the room when he told me that I needed immediate surgery if I was to live.

"So how are you feeling?  You're gaining weight, that's good.  185 pounds?  That's a good sign and you look good.  Any pain?"

I shook my head and watched him as he scanned the pages of documents in front of him.  In the same manner that he would order a sandwich, he gave me the news.

"Ken, you are officially in remission."

Diane choked back a sob and I just stared at him.

"Remission...?  As in really remission?"  I couldn't think of anything else to say and I realized just how childish that probably sounded.  The hundreds of foot-pounds of pressure on my shoulders drained down my body and out of my feet, almost like a physical experience.

Dr. Sheinbein smiled and nodded his head.

"We're not really sure what has happened, but the head, neck, lymph nodes and lungs are all clear of cancer at this time.  My best guess is that the residual radiation has taken care of it.  We really don't see radiation working this long or this hard but given the aggressive radiation treatment you received and the unusual amount of scarring on your throat, we can't rule that out.  At any rate, we'll take it."

And with that the appointment was over.  He scheduled me for another PET scan in three months...a schedule I will have to follow for the next two years.  And yeah, they are expensive.  About $4500.00 each, but thanks to you, I can receive those scans, and the follow up treatments from Dr. Scholl.  Who has, in turn, assured me that should the future testing and treatments eat away at the donated money, his offer for waiving or reducing the cost of the surgery still stands.

So.  Life after remission?

I still battle radiation fatigue from the loss of muscle mass daily.  I am trying to return to work as much as possible but even with my daily Proton Energy Pill, I am still drained by 2 PM.  I have fallen terribly behind in both computer repairs and installs and I don't know if I will ever be able to catch up.  I have tried to explain to many of the people on the waiting list and most of them have been understanding, some not so much...and I don't blame them.  I'll do the best I can.

So yeah, I quit smoking.  To start smoking again would not only assure the cancer would reoccur, it would be spitting into the collective face of all those who have come to my aid when I needed it most.  Truth is, I don't even think about it anymore.  The use of a vapor device has made sure that I have no urge to smoke and it contains no carcinogens.  I firmly suggest different modes and models of the "E-Cig" to anyone who is trying to quit smoking.  There simply isn't any reason to smoke any more.

And besides....you don't want to go through having your throat sliced open while you are awake to drive that point home.

All-Righty Then...
  


11 comments:

Michelle Klein-Hass said...

Durable remission, I'm totally hoping...what a warrior story you have! Cancer bites.

Mark Unwin said...

Simply great, awesome, wonderful news Ken. So happy for you and Diane.
:-)

Thomas A. Knight said...

I'm in awe. I'm so glad to hear this Ken. I'm so glad the world will continue to have your efforts. The world truly needs more people like you.

Dave said...

There is a book that can very successfully teach how to happily and effortlessly get rid of any need to smoke. Even the (not really so inoffesive after all) e-cigrattes.
I read it, I quit smoking with no effort at all and never looked back. Not even a bit.
I am in Italy and I read it in Italian, but it's written by some English accountant whose name is Allen Carr, so it's certainly available in English.

Dean Pannell (aka dinotrac) said...

That ain't workin', that's the way to do it. Money for nothin' and your chicks for free.

Heroic or not, we're REALLY REALLY glad to hear the "R" word.

Anonymous said...

Awesome news. Made my day!

Sean Lynch said...

Thanks Ken, and good luck!
The story brought tears to my eyes.

pefi said...

I'm really happy to read that you're "up & running"!
All the best,
Przemo

Anonymous said...

Ken, two years ago a friend of mine suggested the E-cigs and he guided me through all the junk sold on the Internet and straight to the actual devices that work. The "starter" kits that look like physical cigarettes even with a glowing tip are all pretty much junk. I'm lucky enough to have a brick and mortar store close to home in Seattle that carries everything I need, from cartomizers to different liquids.

People are funny though, especially in eating establishments. Even though they are mostly odorless, if people see what they believe to be smoke, they freak out and have a waiter or manager come to your table and demand you stop. I just tell the manager or waiter to return to that table and demand they STFU. Of course, being discreet will bypass a lot of that and being pure water vapor, it dissipates in your lungs quickly if you hold it for a very short time. With a little discretion, no one is the wiser.

I have successfully quit a 30 year 2 pack a day habit with my E-device. Nothing else worked for me and it's cheap. Of course you can always use them to taper your nicotine addiction and quit everything all together, but I enjoy it.

I just posted to say thanks for letting us know Ken. It was a dark time for many of us when we found out you had Cancer. A lot of people quit or just get tired during Cancer treatment. It can be brutal. Sticking through it was heroic, regardless of your motive.

Santam said...

Good to know about the update. That is another innovative idea you have given me regarding how to run a stop smoking campaign - show a real live tracheostomy being done with some LA only. On the other hand I have seen people smoke under no smoking signs :-)
Glad you quit Ken .. it has far more benefits than losses.

Jeff Smith said...

Aww dude so good to know your alright.

I was choking up reading this thinking the "R" word was going to be Relapse.

Stay strong Ken.