90 Days of Doubt

90 days.....

That's about how long it's been since I last posted.  Not because there wasn't anything to say......

I just didn't have the physical ability or psychological will to say it.

And I knew from simple life-experience that it wasn't wise to get cocky.  In the last quarter of my radiation treatments, and just before my last chemo therapy, I remember saying to myself:

"I've got this treatment stuff licked."

No...no I didn't.

I promised to talk about chemo therapy.  There really isn't much to talk about.  They insert a large IV needle into your arm, attach it to a bag full of foul-colored liquid (looked like urine to me) and turn the little valve on the clear line.  You watch as the poison slowly creeps down the tubing and into your body.

There's little to notice then...no burning, no discomfort.  You read a book, watch TV, answer emails on your phone....

Maybe nap.

Two hours later, you are finished.   They unhook you, hold you for 30 minutes to make sure there are no immediate side effects, then they release you.  As you drive home, you wonder what all the noise is about chemo....how sick you become....how incapacitating it really is. This isn't anything like what you've been warned to expect.  Sweet.

You've got about 24 hours before you understand.

The first two weren't bad actually.  Some nausea, diarrhea and fatigue...enough to put you flat on your back for a few days, but much like the flu, you get over it.

I had three chemo treatments.  Coming from a hereditary line of men with male pattern baldness, I really wasn't worried about losing any more hair.  Fact is, I didn't lose any hair during chemo.  But the third and last treatment?

It didn't take 6 hours for the ill effects to strike, and they struck with awesome impact.  Remember, the cancer patient is often undergoing radiation treatments at the same time.  In my case, the trach jutting from my neck wasn't just an emergency measure to allow me to breathe past the tumor in my throat.....

It allowed me to breathe as the second degree burns swelled the tissue to the point of my throat being completely swollen shut.  The vomiting after this treatment was unrelenting and I remembered thinking that if I had known what this would be like prior to doing it, I might have just blown it off.

The pain was unparalleled in my experience.  I have suffered gunshot and shrapnel wounds, I've fallen from almost 40 feet and crushed the bones in my face and fractured my spine.  I woke up prematurely during eye surgery after suffering massive hemorrhaging from a concussion blast in 1972.....

Nothing had prepared me for the pain in my mouth and throat.  Eating like a normal person became impossible.  A feeding tube had been inserted in my stomach so I could inject liquid nourishment....Boost, Ensure, and later; blended mixtures of fruits and vegetables Diane created for me.

All in the effort to beat throat cancer.

And no, I won't capitalize it....I won't give it that status.

I started by saying that I've not updated this journal because I haven't had the physical ability or psychological will to do so.....

A combination of severe radiation fatigue and depression have kept me away.  The chemo therapy resulted in a 60 percent hearing loss and an unusual side effect of diminished vision.  I can see fine for distance, but things 6 to 18 inches away are a swirling mix of colors and motion.  Hearing is not only greatly diminished...I live with a circle of white noise surrounding my head that manifests itself akin to 20 electric guitars randomly playing garbage notes.

Focusing on anything that is illuminated by a back light, such as a computer monitor, causes me severe nausea.  Without extremely dark glasses I can only sit in front of a computer for 10 minutes at a time.  There is a specialized monitor that will alleviate this but it's expensive past the point of me being able to afford it.

And the trach....what I consider to be an abomination of PCV pipe jutting from my throat.  I try to cover it with a bandanna when I am in public, but I still feel like a freak....kids stare, ask me what it is.....

It's gotten to the point where all I want to do is stay home and work.

But for all my complaints and cry baby sniveling....I am still here, vertical and vocal.

So, why did I title this entry "90 Days of Doubt"?

There is a period of time when no one knows how effective the treatments were.  Three weeks ago, I had a CAT scan to see what had been done.

It wasn't particularly good news.  Just more than a third of the tumor remains, but because my insurance balked at the needed PET scan to measure live tissue, we don't know if this is scar/dead tissue left unabsorbed by my body, or if it is live cells.  This is, after all, a horribly aggressive cancer.

To this point, I have gained almost 20 lbs back of lost weight and I am eating well.  That in itself is a good sign.  I lost just shy of 50 lbs in three months...20 of those pounds, admittedly, needed to go anyway.

Fact is, two days ago, sitting in this very spot, I stood to leave the room when the end of the mechanism of my feeding tube snagged on the edge of the desk, completely pulling a surgically-implanted device from my stomach.

It was painless.

A quick gush of warm, not-so-pleasant smelling liquid, then the sudden shock of realizing what had happened.  Quickly washing and bandaging the wound, I did an internet search and found that when a doctor removes a feeding tube, he does it much the same way, sans the computer desk.....he just gives it a quick jerk and sticks a bandage on it with a bit of polysporin.

I didn't even go to the emergency room.....nor have I notified my doctors.  Even though I have not used it in over a month, they advised I keep it in.  Screw that...if they want me to have another one, they can put another one in.

The fact remains, if the remaining mass is live cells I will have to undergo surgery to have my larynx removed.

That's fine...I am prepared for it.

Yeah...like I was prepared for this whole thing.

So the prognosis?  90 Days of Doubt should end shortly.  My insurance company has finally agreed to the PET scan.  We will know soon if there are live cells and given that possibility, I will have to have another procedure to quell this monster within.

I'll let you know.

Diagnosed with Throat Cancer - Treatment 1 - Wearing the Mask

There was no "honeymoon" period between being diagnosed with throat cancer and the treatments.  there was no sticking my toe in the water...no "getting comfortable" with the idea.  It was all about attacking this thing and giving us the best chance possible for beating this thing.  I began both radiation and chemo treatments while still in the hospital.

I said us......

Many of the stories and support forums talk about some individual's "fight" with cancer.

That's short-shifting a lot of important people in the process.

I mean, let's face it.  As a person diagnosed with cancer, you are put in just about the most vulnerable position of your life.  So what is this "battle" you, as a person with cancer, has to win? 

Not much really....

You show up for your treatments, remain hydrated, keep up your caloric intake and you keep everything except positive thoughts out of your realm of existence.

The Doctors, technologists and the technology will do the rest.

I don't remember much about my stay in the hospital.  I vividly remember having my throat slit open so a trach could be inserted.  Radiation treatments tend to make tender tissue swell.  Even after the tumor has been shrunk down enough to eliminate it as a blockage threat, you still need the trach in order to maintain good air flow.

Actually, in my case, I am wondering at the accuracy of that last statement.  My ENT wants to keep it in for 8-12 months after treatment.  Personally, I know for a fact that I am breathing 100% on my own without it.  I have bypassed it just to find that airflow is good without it.  If I could take it out today I would but I've been advised against it so in it stays.

For now.

It is extremely uncomfortable on all levels...physically, socially, psychologically...

It's a fricking piece of ugly plastic pipe sticking out of my neck....and I am painfully aware of it...

Again, on all levels.

So while in the hospital, they took me over to Texas Oncology and "made" my radiation mask.  It was horribly hot and took longer than I was comfortable with but once it was custom made to fit my treatment plan, it is my daily friend.

Just what the mask is and what it does can be found here, as well as some general information about the treatment itself.

I think what I found most disturbing at first was the overpowering feeling of being water-boarded.   You are laid on the table with your hands put into pull-down restraints and "the mask" is put over your face, head and shoulders then bolted down to the table.  Your head is completely immobilized and at first, I had to ask for an injection of ativan (lorazepam) in order to get through the initial treatments.

This is where I was taught a bit of self-hypnosis.  It would be easy to completely freak out here...but with some training and mental imaging of the rads being the "good guys" attacking the "monsters", I was able to find my happy place and get through it.

Because it sucks....it honestly sucks to be locked down on that table.

But so does allowing this monster to run amok in my body.

So where am I?  I am about 2/3rds through my rad treatment and I show all the symptoms of a grumpy, burned, no-appetite-having, hair-falling-out, cancer treatment patient.

As far as this being "my battle"?

No, it's "our" battle and I want to thank my Dr's and technicians for fighting so hard for me.

I appreciate it more than you know.

Next:  Stay tooned....we're gonna talk about chemo.

Ken 

Bucket List...? Geek Please

On the 26th of February, 2012 I was initially diagnosed with Stage 4 cancer of the Larynx.

Diane was told to take me home and make me as comfortable as possible until the end...and that end would probably be soon.

I wasn't surprised.  In fact, I knew what it was before the first test was taken.  After Diane demanded a second opinion from and Oncologist instead of an ENT specialist, things changed.

The only thing that did surprise me is that after it was MRI'ed, CT Scanned and x-rayed a second time, it was downgraded to stage III and had not involved itself via lymph nodes nor had it spread, despite its advanced stage.  Lungs, bones, brain, pancreas, liver, kidneys, and testes were all clear.  No metastasis as far as the testing could see.

So I caught a break...but here is how I dealt with "the talk" between myself and my Oncologist.

I knew when he walked in with clipboard, that I was going to be given the prognosis and treatment plan.  Many of you know that I've seen and heard this before.  Before he could start, I held up my hand and told him what was on my mind.

"Dr, I know you have information on my condition and probably a prognosis.  I don't want percentages, I don't want the expiration date if there is one.  I simply want to know if I have an even-money chance of beating this thing.  All I need is a yes or no answer."

He looked at me for a full 15 seconds before he answered.

"Yes Mr. Starks, you do."

And that's all I needed to hear.

I did not want mental or psychological limitations put on this fight.  I didn't need any restrictions on my recovery.  I just wanted a 50/50 shot.

I wanted a fighting chance of beating this thing.  And now I have exactly that.

Funny though....the way some people change in the way they treat or approach you once they find out you have cancer.  Sometimes it's barely perceivable...sometimes it's an overt and almost painful change...sometimes it manifests itself as pity, sometimes even anger.

"How can you do this to me....I need you."

And that's actually an honest reaction because in my case, this is a self-inflicted wound.  Too many years of smoking, drinking and not taking care of myself.  Never thinking that there are people counting on me...counting on me to be there for graduations, marriages and births...their life.

Selfish.  I was selfish.

And still through it all, there are a surprising many that did not judge.  And really, what does that accomplish in the long run?

Guilt?  remorse?

I have plenty of that and then some.

What took me by surprise mostly were the comments, emails and phone calls that took a particular bend.  I will paste a couple small excerpts from the correspondence received....you will get the picture.

"Ken, listen.  I know you have every expectation of beating this thing, and so do I.  but if, God forbid, things go wrong, well, what is it you want to do?  I mean, I know that sounds morbid but just think about it and let me know.  I love you man..."

Well, I guess I love you too but I'll reserve the final "love you too" until I can find out which anonymous you are.  ;-).

Hey Ken, I don't want this to sound like it came out of the movie "The Bucket List" but if there were anything you ever wanted to do because you were too busy with HeliOS or just could not do for any reason, what would that thing be...?"

I don't know...I've really never thought about it in those terms.  I mean, to be honest here, screw a "bucket list".  I have no intention of approaching my illness and recovery shaded in that expectation or outcome.

What has driven my thoughts and energies is getting The HeliOS Project back on track and putting computers into the hands of those that need them most.  I mean, that IS my life.

The combination of the disease, the radiation treatments and the chemotherapy haven't exactly been conducive to getting this done.  Fact is, it's kicking my ass.

Diane read some of the emails that took on this particular flavor and posed the question herself.

And surprisingly, once I actually thought about it, it came to me without effort.

See, I am an ex-player, a fan and a student of the game of Baseball.  It is the one real passion I have outside of my work.  I was a catcher from the moment I walked onto my first little league field up until my short-lived but glory-filled days in college.

I've felt the sting of too-tight shin pads, the impact of a foul tip smashing itself into my mask, the blinding pain of a broken thumb when I tried to smother a slider-gone-bad, and the thrill of facing a player barreling down the third base line and all that stood between him and a one run lead was me....all 140 pounds of me, crouching between them.  Some I won... most others I got splattered like a kitten facing a speeding 18 wheeler.

And I experienced the absolute triumph of throwing out a season-high 58 percent of the idiots trying to steal second base on my watch.  I had a devastating move to 2nd and I could smell a suicide squeeze coming from a mile away....

well, 90 feet away to be exact.

I have a dear friend of mine that shares my passion.  We don't exactly share much else. Our political beliefs could not be more polarized and our individual baseball teams are miles apart, and not just geographically.

It's our shared love of FOSS, Linux and community that makes all those other differences between us make absolutely no difference at all.

See, his team, the San Francisco Giants are the 2010 World Series Champs.  They had a Cinderella season while my guys, the Houston Astros, well.....they sucked all season....and there seems no relief in sight for said suckage for several seasons to come.

But none the less, they are my team.  They are my boiiiyyyyys.

So what....what is it I would like?  I don't know that it could ever happen, but if I could have one thing that I probably could not achieve myself, I would want the opportunity to attend a three game series between the Giants and the Astros with my friend Larry here in Houston on the 28th of August.

It was just a month ago that I was initially told I would be dead by then.

Unfortunately, I cannot travel far due to having a trach tube....my friend Larry Cafiero would have to travel here.

Late but important edit:  I completely blind-sided my friend Larry with this and did not mention it to him prior to publishing it and the last thing I want to do is put a good friend on the spot.  He isn't involved in this in any way except in being a victim of potentially having to sit with me through three ballgames in Houston.  My apologies if I've caused him any discomfort. 

But you asked...and that is what I would like to happen.  It would probably cost at least 500 bucks and by that time, I might have the money and be able to make it happen.

I will more than certainly let you know if I am able..

No Disneyland, no exotic trips to India or the Mayan Ruins.....not even a ride in a NASCAR at Daytona.

Just a few days in the sun, watching baseball with a good friend.

So anyway, there it is....that is the entire contents of my "bucket list".  Pretty sad huh?

For what it's worth.

Ken