Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Understanding Pain And Temperature


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Unless you have spent any time in the deep south, the following statement is probably going to be met with a major “eye roll” and a comment under the breath, “yeah, right,” but waking up to 43 degrees was not only cold, not only painful, but also reminded me of a condition that I have not had to deal with in over two years since I moved to Florida.

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The picture on the left shows the remnants of winter storm Jonas, with an actual amount of 31.9 inches of snow.  I missed this storm living in Florida.  But in the picture on the right, the second most snowfall occurred back in 1983, which I was a senior in high school.  The remaining three storms like this, were following my battle with Hodgkin’s Lymphoma, and the last two following heart surgery.

Why do I bring this up?

Treatments from over 25 years ago have left me dealing with some late issues with my body that developed over time.  During cold temperatures, I am reminded of one of those issues.

I cannot recall exactly how my lungs felt prior to my heart surgery in 2008, but I do know that following my surgery, my temperature tolerance dropped about 10 degrees.  Up in the north, I learned to deal with this issue by wearing wool over my mouth and nose, and wearing extra clothes to stay warm.  When did I have to start doing this?  Once the temperature went below 60 degrees.  My cooler weather apparel was often met with mockery, and only those who deal with similar issues can know what I was physically feeling.

The first thing that hits me is breathing in the cold air.  The only way to describe the feeling is that my lungs instantly freeze up solid like a brick.  Your lungs need to expand, and my lungs will not.  My current lung capacity has been measured at 76% from progress damage due to radiation therapy.  In fact, the lower lobe of my left lung is completely “dead”.  The only way for me to get relief, since inhalers do not work, is to get into a warm environment as soon as possible.  The “thawing” out of my lungs if you will, can take up to about a half an hour, possibly more.

But in the meantime, two other issues appear once the cold hits my lungs.  I often begin to have an anxiety attack, at the panic of my restrictive lung disease.  And with that, my breathing becomes even more difficult, the anxiety gets worse, and then the pain hits.  Again, the best way to describe the feeling, is my muscles, especially in my back and hips “constrict” like a boa constrictor is squeezing me.  Again, there is no relief other than thawing out.

My late developing issues from treatments for Hodgkin’s Lymphoma are progressive.  There is only one thing I can do, and that is “manage”.  There is no cure, no reversing what has happened to my body.  My moving to Florida I thought would have helped with this particular issue.  But recently, our weather has turned colder down here.  No, I know I will never volunteer for sub-freezing temps again, or major snowfalls, so I will state that my friends and family in the north will deal with much worse when it comes to cold temperatures.  But for me, 43 is cold enough to remind me what my body has gone through, and still has to deal with.

Upcoming Publication


I am once again thrilled and honored to have one of my written pieces being published in the annual anthology called “Visible Ink”, published through Memorial Sloan Kettering Cancer Center, more importantly, written by the patients and survivors of MSKCC, of which I am one.  This is my 5th year in a row having a chapter submitted to this anthology.  Last year I was honored among 15 other authors/patients in having last year’s piece performed live in Manhattan.  All of my submissions over the prior 4 years can be found on my “pages” of this blog.  To see the actual performance from last year, titled “My Dad Was Just Like Me,” go to this link:

Visible Ink was such a wonderful opportunity for me, as it is for many others patients and survivors.  It is hard for many to understand how hard it is for us as patients and survivors to convey our feelings.  To be honest, we can accept that a lot of people are just uncomfortable talking about cancer.  And many times, it is not enough just to talk to our doctors, nurses, therapists, and anyone else involved in our care.

Visible Ink is a volunteer peer writing program that assigns each writer a professional writing coach, who assists us in writing not just submissions for this anthology, but for any writing assignment that we choose to take on.  We can be as active or inactive as we choose to be.  But each year, most of us will put together a special chapter that will appear in this annual anthology, much like the “Chicken Soup” books.  Not every chapter is written about cancer either.  Some chapters are about experiences that many of us have had following cancer, things we might now have ever had the chance had we not beaten our cancer.  While those who read this book may feel inspired, hopeful, for the writers, this opportunity is therapeutic.

I have enjoyed writing nearly my entire life.  I took a looooooooonnnnng break from recreational writing (I wrote many opinion columns for newspapers), and several years ago, I was introduced to Visible Ink which I write for, along with “Paul’s Heart”.  As a 25 year cancer survivor, I can still be inspired by all of the stories that I read in this book.  And each year, I get to meet so many of the authors either in person, or just over the internet, but the reaction is still the same, I am inspired.

No clue as to what this year’s chapter is written about, as I will wait until the book is released at the beginning of April.  If you would like to find out how you can buy the book, or any of the previous books, feel free to contact me, or go to Visible Ink at the MSKCC web site, or better yet, if you go to the gift shop, I know that they carry each book from the previous years.

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My History Of Veterans Day


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I have two uncles who served in the military.  I do not remember many details of their military careers.  I know the younger of my uncles served in the US Air Force as a mechanic, which would eventually serve as a path to his career working for one of the biggest truck manufacturers.  The older uncle was a pilot in the US Navy.  Again, I do not know that much about him, other than he had served in the Vietnam War.  I had been told that he had been shot down during the conflict.  He remained in the Navy long after the war ended, only to be medically discharged following a training exercise helicopter crash.

Because I was aware of the military at such a young age, and because I had veterans in my own family, I began my life with an appreciation for those who volunteer to preserve our rights and freedoms.

My Saturday mornings as a teenager were spent visiting the home of a childhood friend’s grandfather.  We would visit the home in between our Saturday morning activity bowling and then instructing bowling to the smaller children.  During our break, we would visit his grandfather’s house, enjoy a tasty hoagie, watch a little professional wrestling, and if time was left, we would get to hear my friend’s grandfather tell us a story about his experiences during World War 2.

Upon high school graduation, it was common for students to enlist in the armed forces.  One of my best friends, and unlikeliest to enlist, did so in the US Marines.  Somewhat of an introverted nerd, he actually did very well with the Marines.

During the late 1980’s, our country was headed back into another war, to liberate a country from tyranny.  This was going to be the first time that our television would play such a major role as we watched repeated bombings and attacks on key strategic targets were mean to provide freedom to a country overrun by a dictator.  This was also the first time, I would actually relate to people who had actually served in a war that I was witnessing.

Again, I had reunited with my friend’s grandfather later on, and I enjoyed hearing even more stories of his days in the US Army.  I was learning history from someone who was actually there, not being told to me from a text book.

More than a decade later, our government felt an even greater need to get involved in affairs overseas.  And now, children of relatives and friends of mine were now headed off to war.  Some were sent home for medical reasons, only to be sent back for another tour of duty.  Many struggle both physically and emotionally with the images forever engrained in their brains.

Social media like Facebook and Twitter opened up a whole other window, as I became more aware of the many more classmates and friends who had served in the military.

I am proud to know each an every serviceman and servicewoman who have served our country, protecting our freedoms, fighting to preserve our rights and beliefs.

And these are just some of the many things that I had the conversation with my daughters yesterday.  I made a post on Facebook, frustrated, having found out that my daughters’ school made no mention of Veterans Day.  While there were responses stating that other schools had paid tribute to our Veterans, it was disappointing that the school that my daughters attend, did nothing.

When schools spend so much effort to make sure that our children master Common Core and standardized testing, history is being ignored.  And history is important because one of the things that history teaches us, is what not to repeat.

My daughters listened to the many stories of the many people I know who have served in the many branches of the United States military.  I never had the opportunity to serve, but I am thankful to each and everyone who has.

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