Monday, September 27, 2010

Hidden Truths

 Chuck had lost weight, his hands turned a pale yellow,
His feet and skin began peeling. 
His intestinal gas was so horrid smelling,
My father would spray the bathroom after wards.
And we, as a family, would snicker under our breath.
Even Chuck himself, would smile,
Though somewhat embarrassed.

It was 1988 and we lived in Fort Wayne, Indiana,
  His symptoms were getting worse; he looked like death.
Doctors had no idea what was going on.
We went to see so many specialists, 
Mostly in the "big city" of Indianapolis.
 Then we got some strange answers.
He had contracted a rare allergy, triggered into action
by one of the millions of viruses roaming our earth. 
Most commonly referred to as Celiac Sprue Disease.       
On came the nutritionists and dietitians.
On came his very special diet.

No Wheat, Rye, Oats, or Barley.
Equating to NO Pizza, NO Cookies,
And definitely NO Homemade Apple Pie.
For the most part he came around to normal.
Healthy, Happy, and Back to work.
Given a clean bill of health as long as he followed the diet.
We ordered his flours from a place in Seattle, 
and cooking creatively became our number one pastime.
We had two sets of pans, utensils, and even a double oven.
Thanksgiving was a real challenge with two Turkeys.
One with regular stuffing, one with rice stuffing.
We made regular decorated Christmas cookies, 
and some made from Corn Flakes sprinkled with colored sugars.  
A year or two passed; he and the kids managed to cook, and stay healthy.
I worked at my career,  and traveled too much.
Chuck continued the work he loved, as a master carpenter.
Then he had another stomach attack.

At first we thought he just had the flu, 
And the hospital said he "was just constipated."
We had just moved to Indianapolis, so we found a new doctor.
The appointments to specialists followed, 
Until we arrived at the gastroenterologist.
He ordered CT scans, and MRI's, and numerous other tests.
It was determined to be a cyst in his pancreas.
"Just stay off the dairy products," they said.
We  looked at each other questioning this advice. 
What's left but proteins, fruits, and some carbs to eat.
New diets from the dietitians, followed by lists of Dos and Don'ts.
His health instantly improved, and all was right with our world.
Again we were back on the right track, or so we thought.

It was November, 1990.  Only 5 months had passed since my transfer.
New house, new friends, new schools, new job for Chuck.
I was already overwhelmed, and now a new diagnosis,
A new diet regime to put into place.
And the Holidays were right around the corner. 
It was to be the first Christmas that we would be all together as a family, 
ON the actual DAY of Christmas, December 25th.
It had to be just right and very special.
We planned, shopped, cooked, and baked.
Then the day came, and we knew we were truly blessed.
Laughter, stories and pictures of old times.
A meal inhaled by my older boys, and Chuck with his "specialties."
Everyone left with a full stomach, a full trunk of gifts,
and a heart overflowing with memories, old and new.
And of course with my luck, the pictures didn't turn out.
On December 27th, we were at the hospital again.

This was to be the "visit of truth," as I refer to it.
More tests; "Did he eat anything he shouldn't have?"
"No, we are very careful about that." I said through the tears.
"Please find out what is REALLY wrong with him, PLEASE, "
I remember begging, maybe a little screaming, at the doctors.
It didn't take but a few days for them to tell us.
The "cyst" had grown larger, 
BUT all the other tests were perfectly normal,
and he was not in any pain whatsoever.
To them, as well as us, it was a scary mystery.
They wanted to take part of the "cyst" out to biopsy.
That couldn't be done until January,
The surgeon was on vacation.
Not to worry they kept saying, he is doing fine.
"FINE?", I remember screaming, 
"not knowing, is NOT fine."
So we went home, until the surgeon came back from vacation.

Our appointment with the surgeon was on January 13th.
Can't remember if that was a Friday. 
I was numb and terrified, but locked it away, were no one could see.
Chuck seemed to be "acting" like his old self. 
Smiling, talking, joking with others around him.
In with the surgeon, it wasn't long before I exploded.
"How do you KNOW it isn't cancer?"
The highly regarded surgeon said calmly,
"Because he has no symptoms, and it doesn't look like cancer."
He turned away as he said,"But the biopsy will tell us just what it is."
Surgery was scheduled for an agonizing week later.

The hospital was a buzz of activity, at 6:30 in the morning. 
I hadn't slept all night, and I didn't want to leave Chuck's side, 
so no coffee and donut for me.
I looked down at him. He looked at me.
He smiled that big old smile, I let the tears drift down my cheeks.
Such a picture of health, and happiness I thought,
except for all the stuff that was attached to him.
The nurses came and off he went, 
Telling me not to worry, and to not cry in my coffee,
A few hours passed.
The doctor broke the silence of the waiting room calling my name.
They would need to try "something else" tomorrow.
The entrance to the pancreas was blocked.
He turned away, oh so professionally, 
As I navigated my way down the hall with clouded eyes.

That night, "truth or dare night" as I refer to it,
Chuck told me to call my parents to be with me the next day.
I looked in his eyes , as I hung the phone back up,
"What are you not telling me? Why do you want them here?"
Would you tell me if something was very wrong?"
Calmly, and ever so quietly he said,
"I would never lie to you. I never have."
In my deepest gut there was a voice telling me
He couldn't, or wouldn't, say anymore. Conversation over.
I just picked up the phone and called them.

In the morning the atmosphere felt eerily different, 
 More "stuff" was wired to him.
Irritating. He's smiling; I'm shaking and smiling, 
determined not to cry before he was taken away,
brushing over my hand as he went by.
The nurse gave me a hug,
"Why all this attention I thought? Something is so wrong."
I could feel it in the air,  in the whispers of the nurses, 
and when my ears begun ringing as I fell to the floor.
I awoke with a cold rag on my head, and apple juice on a tray next to me.
The nurse came over and asked if I was better now.
"Yes. I just need to go to the waiting area." I weakly whispered. 
And in the waiting area all I did was wait, and wait, and wait.
For 6 hours I waited, then asked the nurse AGAIN for an update.
My parents had arrived and brought my 15 year old son.
The doctor arrived in a white garb covered in my husband's blood.
" Let's go somewhere and talk privately."

In a room filled with several comfy chairs, and screens to view xrays,
I finally learned the truth that had been hidden for the past years.
"Cancer comes in all forms and dimensions," I could here him say.
"In your husband's case none of the normal signs were there."
"What will we do now?" I tried to patiently ask.
I was crying so hard, I didn't even know he was holding me up.
"We'll try several treatments, and see if anything will work" he answered.
"Just go be with your family. It will be a while until he's in a room."

Hell, at that moment I didn't even know what day it was,
let alone what time it was.
The next moments are a blur to me as I walked towards my family.
"The cancer is everywhere, they could only make him as comfortable as possible."
My father took me in his arms and gently rocked me, rubbing my back. 
He gave me a handkerchief. One that I still have in my Bible today.
Sadly this memory of my late father, is one I often refer to
when times are hard for me, and my life needs a family to hold on to.
The truth had laid dormant inside this man, and no one knew it.
I often think we were naive in not asking more questions,
not demanding more answers, more tests.
We were tired of all that, I suppose, and accepted what they told us.
To this day doctors still insist, that Celiac Sprue Disease,
  (his allergy to grains that developed out of nowhere),
Had no influence on the cancer diagnosis.
And if you, or someone you know, has this disease,
Ask for more, much more, and still more
More answers,
Until you find the hidden truth.






1 comment:

  1. I can't imagine the sorrow and pain! How horrible. And you're so right, ask for more. You've just reminded me - life can be short, don't take it (or your loved ones) for granted. Bless you.

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