Friday, August 3, 2012

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." 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 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 sick you 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 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. 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.