Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “February, 2013”

Helping A Leopard Change Its Spots


I wrote a short while ago, about being a very picky eater.  At the time, the story was nothing more than just a bad habit that I had.  This is in spite of knowing so many people who have had to make lifestyle changes, or watching year after year of The Biggest Loser and Celebrity Fit Club.  Now, it is my time.  I do not have a choice.

I learned my bad dietary habit when I was young, like three years old young.  Prior to my parents divorce, I had been told that I would anything placed on my table.  But following that event, I then turned my nose up at just about everything.  I do remember from my earliest days, being strictly a meat and potatoes kind of kid.  It is not that I was into junk food either.  I just refused to eat vegetables.

In my teen years, my behavior only solidified,  but it was reinforced by situation.  Unfortunately, I found myself often fending for myself, and whatever my part-time after school job could afford, which basically was fast food.  And that behavior followed me into adulthood.  As I maintained a busy, on-the-road schedule, there was no time to sit down and eat, even think about what I was eating.

A battle with cancer, emergency life-saving open heart surgery, kidney stone, high cholesterol and blood pressure, by themselves would be reason enough to change my dietary direction.  But as I face yet more issues from late term side effects, these issues have a direct impact on the food I will eat for the rest of my life.  I have no choice at this point.

For the last several years, I have been experiencing a “swallowing” issue that results in a choking sensation when swallowing food.  Two years ago, it got to the point once it began to be too difficult to swallow even soft foods.  Desperate to get calories into me, instead of opting for nutritional drinks such as Boost or Ensure, I went for probably the worst caloric shot, Coke and melted Snicker Bars.  For at least two months, this is how I maintained my weight until the swallowing got worse and I adjusted to Cokes and milkshakes.  Then it happened, I could not even get them down without the choking sensation, even water was difficult.

An endoscope revealed some concerns, but nothing that was blatantly obvious.  It was recommended that I quit drinking soda, eat better, the works.  I am not sure what else was done while I was scoped, but my swallowing had been restored.  Late last year, it began to resurface.  More probing would reveal that I have now developed Barrett’s Esophagus and something called eosinophilis esophagitis.  In spite of being on PPI omeprazole, the acid content of my stomach was described by my doctors as “angry”.

So there are concerns with such a high acid content in the stomach, and the increased risks associated with having had radiation therapy, the biggest concern, esophageal cancer.  Barrett’s Esophagus can lead to esophageal cancer.  So now, everything is in my corner to have the best opportunity to at least attempt to prevent anything worse.  The doctors are hoping that the major change to my diet will correct and right things.

It may sound odd for a 40-ish year old man, to need to be told not only what to eat, but how.  but that is exactly what I will need.  I have to eliminate 95% of my diet, and substitute it with 100% of what I do not like to eat.  I cannot allow my weight to crash, or let malnourishment occur.  If I let this happen, as has happened on other occasions when I have pushed my body too far and too hard, I will crash.  In the past, I was able to do the quick boost of calories.  I appreciate the outpouring of suggestions to make the “horrible” food taste good to me.

Fortunately, my daughters have not picked up this habit.  They are both good eaters, and do what they can to get me to eat right, even resorting to the old “double dog dare”.  But for now, here is the current short list of things that will pass my tonsils (there is much more available, I just won’t eat it):

Bananas

Apples

Oranges

Watermelon

Pumpkin

Potatoes

Onion

Carrots

Sweet Potatoes

Lettuce

1-2% Milk

Egg Yolks

Chicken

Turkey

Tuna

Sea Salt

Cinnamon

A Rough Day (Again)


I do not hide it.  I wear my heart on my sleeve.  I will admit to being calm, cool, and collected in times of crisis, and it is extremely rare that an emotion will be seen from me.  Whether I am sad, angry, happy, intrigued, disgusted, trust me, I will let you know.

As a cancer survivor and cardiac patient, I have an appreciation for all things concerned with the world of medicine.  I am not a doctor, nor do I play one on television, but experience has taught me so much.  In all honesty, I should probably go back to college, and get a medical degree.  I cannot say with certainty as I was never a medical student, but one thing that cannot be taught is empathy.  But it is both my empathy and my experience right now that cause me to have a heavy heart, broken if you will.

For the second time in several years, I found myself in a situation of not just a caregiver, but also clinician.  For the second time, I was able to diagnose and issue that had been overlooked, or willingly ingnored.  Because of the empathy and care that I gave, I do not believe there was suffering, but the ending was still so hard to take.  I spent so much time, so much care, so much attention.  And I know it made a difference.  I could see it every day with improvement, EVERY DAY.

Then I am told to stop what I am doing, that it is not right.  It could cause problems with outside officials.  But the problem is, I was never told.  Not that it would make a difference to me though I would walk right up to the line of insubordination, I would never cross it.  The judgement from keeping me perform my job to the best of my ability and humanity would then fall on the individual enforcing this unfortunate political move.  But they had been given too much credibility because of where each of us rank in society.  I know this for a fact.

So to keep from being punished, which has never been an issue at home or school as a child, nor as an adult, I had to immediately cease my efforts, which still would not provide a certainty that I would not be punished.

Today, I lost him.  He is in a better place.  Everyone knew this day would come.  All I tried to do, and succeeded, was make it better for him.  And simply because someone above me did not like it, he lost that quality of care the last couple of days of his life.

This sucks.

The Waiting


Christmas Eve = the longest night in the world for me as a child, waiting for Santa Claus to come.

The night before Easter = the second longest night for me as a child, same reason as above, just for the Easter Bunny with my basket of chocolate.

The first day of school… ever.

Getting a drivers license… forever.

The end of school… forever.

Freedom to do what I want to do, whenever I want to do it.  I am still waiting.

Having to wait around the doctor’s office, just to be told that you have cancer.

Waiting to hear the words, “Your cancer is in remission.”

Waiting to reach the one year anniversary of your remission of cancer, and second year, fifth year, tenth year, twentieth year.

Now I am waiting to reach twenty-five years cured of my cancer.

Waiting for the paint to dry and the pot to boil.

Waiting to be approved to be adoptive parents.

Waiting for the sixteen hour non-stop flight to be over.

We can hear the children down the hallway.  What is taking so long to bring them to the conference room to be placed in our arms.

Waiting for daughter’s first steps.

Waiting in a dazed state to go to surgery for my first ever open heart surgery.

I hate sitting at home doing nothing.  I want to go back to work.  I still need time to heal.

Waiting for the new season of Newsroom on HBO.

My DVR has a pause button.  I can make the television wait for me.

Phone calls.  Can you hold please?

I have to wait several months to see a specialist.  They know what is wrong and time is of importance for best chance of survival.  A three month wait.

Waiting in the waiting room.  Then I wait so more in the exam room.

Scans and scopes, scans and scopes, scans and scopes.  Results pending.  More waiting.

I do not mind waiting for my daughters to grow up, graduate, get married, have children.

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