Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

12,088,800


The opening song in one of the greatest musicals, Rent, is called “Seasons Of Love.”  I am paraphrasing, but the song asks “how do you measure a year?  In daylights, midnights, sunsets, coffees, inches…”  It is a beautiful song.

I have titled this post “12,088,800” with special accounting in mind.  March 3rd is the 23rd anniversary of completing my chemotherapy for Hodgkin’s Disease.  23 Years – 12,088,800 minutes.  Compared to the 10,400 minutes that I was given the chemotherapy, or the 30,600 minutes from the beginning of my Hodgkin’s Journey to the completion, 12.1 million minutes is a long time.

12 million not big enough number?  14 million.  There are over 14 million survivors of cancer.

I am often accused of under-appreciating what I have gone through from my first counselor to the long term caregivers I see today.  I was treated with four times the lifetime maximum exposure to ionized radiation.  I was injected with a chemical that Sadaam Hussein used to gas his own people with.  I was battling a disease that has killed over 600,000 Americans a year, over 1500 per month.  Chances are, this paragraph has your attention.  It should have mine, and it does to a degree, but not what it should.

March 3rd, 1990, I completed 30 treatments of radiation to the upper half of my body, and 8 cycles (fancy term in my case, for months) of a chemotherapy regimen referred to as MOPP-ABV.  I had five surgical scars to show the lengths travelled for my diagnosis and staging.  Statistics of survival were only referred to with a five year mark.  Up until March 3rd, 1995, I had never heard of anyone surviving cancer, let alone more than a year.

Fast forward twenty-three years, as I enjoy destroying odds and statistics, I once again have the world by the tails.  I officially have my longest monogamous relationship with the mother of the two most beautiful girls.  I have a nice house and a great job that I not only enjoy, but take great pride that it is a career that allows me to “pay back” the industry that has saved my life on numerous occasions.  My daughters are now old enough and curious about my “cancer” history.  I am mindful of the time when I was a child, and the only thing I knew about cancer was “people died.”  They are reminded with each conversation that people can survive cancer.  As if this were not enough, brief as it is, I am continuing a local political journey for our local school board that began three years ago.  There is so much for me to be proud of, appreciate, and celebrate.

But yet, on this date, March 3rd, I afford myself only the opportunity to recognize the importance of this anniversary.  I cannot celebrate it, which most people cannot understand.  Wife, kids, career, surviving cancer for decades, I have every reason in the world to celebrate.  But I do not, I cannot.  My survivorship comes with an extremely burdensome feeling, guilt.  Survivor’s guilt.  I live, while others have not.  I am in remission for decades, yet many deal with their third, fourth, fifth recurrence.  Hundreds of patients and survivors have come into my life.  Regardless the distance, I held each of their hands emotionally at the least, to offer comfort, confidence, solace.  But I have also shed so many tears, some of joy, too many of pain.

This is a great day, make no mistake.  I recognize the importance, the value of my survival.  In twenty three years, just two decades, I have personally witnessed the great things that have come in the progress of safer and more accurate diagnostics, safer and more effective treatments.  Because of research from institutions such as Memorial Sloan Kettering Cancer Hospital, the University Of Pennsylvania, and so many other institutions who have made cancer research a top priority, and without the support of organizations such as the Relay For Life, Livestrong, StandUp2Cancer, and so many more, that progress would not be possible.

Here’s to another year.  Thank you.  From the bottom of my heart, for those that took the journey of cancer before me, with me, and after me, I truly mean that.

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that road just yet, you’ll catch up to me.”

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

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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