Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Like Asthma But Different

I noticed something recently with my being confined, socially distanced.  Having nowhere to go or travel to, for 98% of my day, I stay indoors, in the air conditioning in Florida.  While staying cool, it is creating an issue with one of the late side effects that I deal with from my cancer treatments thirty years ago.  I have a condition called “restrictive lung disease” as a result of radiation therapy and chemotherapy.

I need to state up front, the picture above, a healthy set of lungs, is not mine.  And to be clear, the following pictures of lungs that I will show are not mine either.  But they will illustrate my concerns.

This x-ray shows an image that could be mine, but is not.  I see chest wires which indicates the patient likely had heart surgery, and I see EKG wires I believe.  In any case, this image shows damage to the lungs as a result of radiation damage.  How much radiation do you have to receive to have this damage?  I honestly do not know.  How much did I receive?  4000 grays of radiation.  And if you know anything about radiation, such as techs or nuclear power plant workers, you know this is not good.

When I first discovered that I was struggling to breathe, I underwent a series of pulmonary function testing, as well as other imaging studies.  I was found to have several unidentified spots on my lungs (that are being watched if they change over to cancer), and the lower left lobe described as “dead”.  My lung capacity measures 76%.

So what does this mean?  Well, if you cup your hands over your mouth and nose tightly, and either try to talk or do some sort of activity, you will find it has become difficult.  That is sort of what it feels like.  But it gets more complicated.  In extreme weather conditions, hot and humid, extreme cold, or cool wind, it causes my lungs to restrict even further.  The best way to describe this feeling, is like an extreme asthma attack.  The only difference, an inhaler does not relieve it.

When I get hit with these attacks, regardless of the cause, the only way that I get relief, is to sit somewhere quiet and more temperature comfortable, close my eyes, and just concentrate on my breathing.  How long the exposure determines the length of the recovery.  I have been able to do it in fifteen minutes, and it has taken me an hour in others.

I live in one of the more hot and humid states in the country.  I did not always live here.  So, for me to have moved here, caused a lot of people to scratch their heads, myself included.  But there is a simple logic involved in how I have actually dealt with this situation, I control my exposure.  I avoid the hottest periods of the day.  I do not spend lengthy periods of time outdoors, and do not do anything physically strenuous.  And for the most part, my body has acclimated to this climate.

When I lived in the northeast area of the country, I dealt with multiple episodes of lung issues, repeatedly ending up in the emergency room.  One of which nearly killed me, septic pneumonia.  This picture is what a lung affected by pneumonia looks like (again, not mine).

I have held my own here.  I manage my lung issues as best as I can.  My episodes are not as often.  Even my children have witnessed these attacks both in warm and cold climates.  I have assured them, that I know how to deal with them, and they do not need to worry about me.  Just to keep me company and they will see how I deal with these episodes.  This is not something that requires medical attention, just an opportunity to restore.  So, for the most part, all I have really concerned myself with my lungs, has been pneumonias and those spots.  Until…


Of course, like everyone else, the initial reaction was “great, another virus.  Big deal.”  Soon, it was realized, it was a big deal, especially for those with pre-existing and compromising conditions like I have, no spleen, and lung damage, just two of the five boxes I check off for vulnerability.

The concern with the lungs?  Pneumonia.  But a more stubborn and so far, no treatment for this pneumonia.

In other words, if I get Covid19, it will kill me.  Not fear, not fact.  My lung issues are well-known and documented.  I need to avoid this at all possible.  I have previously stated, a vaccine is not likely an answer for me either depending if it is “live media” or “deactivated”.  I cannot receive “live” vaccines because of my immunity issues.

So anyway, I have done what I can to avoid contracting this virus.  I have stayed indoors for probably 95% of my day, in a constant and comfortable seventy-four degree climate.

Well, as things begin to open up, and our temperatures and humidity have begun to creep up to the typical seasonal figures, that 5% is now being impacted.  What this means, is at one time, I averaged my outdoor time about 50-50 pre-Covid19.  I have to once again, work on my exposure levels so that my lungs are not under such duress.

The good thing for me, I know what happens, I know what causes it, and I know how to deal with it and reverse it.  This is just one of those extra things that myself, and other long term survivors have to deal with, on top of the actual risks of the virus itself.  I do what I can to keep my lungs in the best condition I can in spite of the limits.

A Lesson On Behavior From Parent To Child

From the days that I became a father, I knew what I did, what I said, and what I thought, would matter to my daughters.  I would have four eyes and ears surrounding me from different directions, taking mental notes of the many things I would say or do, looking for consistency and if they were correct legally and morally.  Decisions I would make, words I would express, and actions I took, would have an impact on both of their lives, forever.

The first ten years for each, it was always by example.  It was basic.  Sharing.  Empathy.  Telling the truth.  Manners.  Fun with friends.  Anticipation.  Doing things with no motive and no expectations.  It was all about doing the right thing.  Learning and doing all of these things would never require a correction or an apology.  Sure, things could get lost or broken, but my lesson would always include, did anyone get hurt because of it.  As long as the answer was no, we were going to move on to another day.

During the third quarter of their lives, just as things around the home that once were new, they may not work as reliably as in the beginning.  And it is important to pay attention to when things begin to change.  Reinforce well enough, and it can last even longer as the first day.

And so it goes with teenagers.  Other influences appear in their lives, wearing on the values and ideals that you raised your children with.  And that can mean mistakes.  The lessons begin then on how to work through the errors in judgements, minimize any lasting effects, make any corrections necessary, and then move on.  As a result, character develops, because that is who you are.

So throughout their lives, I hope that I have given my daughters everything they need, to figure out the difference morally between right and wrong, how to manage time, differentiating between want and need, and that quite possibly their thoughts and actions may have an impact on others.  It especially starts with their lives, adulthood just a short time away.

My daughters have witnessed a lot of circumstances that can lead to struggles and sorrows for others.  And they have the best of hearts and intentions to want to help, to empathize at the very least.  The legitimately want to treat others the way that they want to be treated.  Which is what makes the current situation we are all dealing with so difficult for at least one of my daughters, if not both, to understand.

As typical teenagers, they were not really aware of the beginnings of the Covid19 crisis.  But the very first thing that came to their attention was not illness around them, but behavior.  A simple thing as shelves in a grocery store, being empty of not just one item, several items.  To my knowledge, my daughters have never been through something like we are experiencing.  They had never heard either of their parents complain about a store being out of something we needed.  This was too obvious, because too many things were out of stock.

And so, my daughters learned about panic and hoarding.  I spent so much time trying to teach them the right way to live life, I made the mistake of not preparing them for the bad behavior of others.

In the northeast U.S., news of a winter storm rushes people to the grocery store for milk and bread, but rarely are the shelves bare.  Along the east coast and southern U.S., hurricanes make people rush out to buy gas, water, ice, and other non-perishables to survive for days if not weeks.  Admittedly, things could get kind of testy among us humans as supplies definitely do run short.

Under normal circumstances, shelves would not remain empty for long, maybe a couple of days.  But my younger daughter noticed, the shelves were staying empty.  What she may not have realized, at some point, the shelves may have been restocked, but by the time they got to the store, the shelves had been emptied again.  It was then that I explained to her the behavior of panic and hoarding.  I explained that people, just like when they prepare for an extreme weather event, they were doing the same now.  The only problem, that unlike a weather event, there was a good chance that we would be asked to remain home much longer than a couple of days.  With most of us not having been through a third world experience, the thoughts of preparing for shortages was unfathomable.  Yet here we were, and still are.  My daughter struggled though with why there was not enough for everyone.

This was just the beginning of the behaviors that would come into question as we all dealt with Covid19.

Commentary from certain people, including “Chinese” as part of the blame, and how it has an effect on them, just because they are Chinese.  My children know they are innocent in this, yet they hear the rhetoric that is generically cast out to spur racist outrage toward people in our country of Asian heritage.

They do not understand the necessity to go to a state capital, armed with weapons of war to stage a protest.  My daughters have learned about protesting from me, because I have participated in them.  And at no time, did I ever present a weapon.  My weapons were presence and words.  But when a question is asked, “what were they going to do with the guns?”

But this is one that definitely gets to them, because they can kind of relate, as the participants being interviewed by various media resources, are young, and as far as I am concerned, ignorant, stupid, and selfish.  “I’m just like taking it like, if I get the virus and die, like, then it was my time.  I’m like going to have a great time at least with my freedom.”  Other than the too frequent use of the word “like”, my daughters have nothing in common with what these “kids” were saying while being interviewed on the beach.  My daughters are doing their part, not to be responsible for spreading or contracting the virus.

They could not understand why these morons first off, felt they were hanging on to their freedom.  My daughters knew that they had their freedom and were not aware it was being taken from them by staying safe.  But even my daughters could understand the dumb thinking that these selfish buffoons were not thinking about anyone but themselves.  How would they have felt had they come down with the virus and taken it to their parents or grandparents, or someone else close to them, costing them their lives.

Sure, it’s easy to be so cocky and confident, “won’t happen to me,” as long as it does not happen to you.  And then it does.  And my daughters have witnessed that too many times with my health.

This crisis has definitely affected their worlds.  But at least the one thing I do not have to worry about, is them losing their common sense, and their core values on respect and empathy for others.  They are not waiting for something bad to happen to make them see the truth.


What The Rocky 4 Soundtrack Meant To Me

When Rocky IV came out in 1985, we still had major tensions with the Soviet Union.  And this movie, the fourth in the sequel of too many, gave Americans not only something to cheer about, but to be inspired by.  Unlike the first Rocky, this one was definitely cheesy and predictable.  That is as far as I will go as far as spoiling.

But the movie did produce a great album, and this is now my third album of ten that had made a difference to me in my life.

Of course, the whole concept of the Rocky franchise simply is just overcoming adversity.  My life has been filled with adversity.  But in the first major challenge of my life, this music made a difference.

I have finally gotten around to writing the book that I have always wanted to write, courtesy of Covid19.  Of the other times I have begun the process, this being the sixth, I am now currently on Chapter 21.  So far so good.

In what I have written already, I mention that I listened to my Walkman during my treatments.  For those not old enough to know what a Walkman is, it was a device to listen to CD’s… oh hell, too much to explain progress.

I placed strategic music on this Walkman.  I was fighting cancer.  And I knew that going through chemo was for the fight of my life.  And after all, in the end, Rocky always won, literally or metaphorically.  So, with my eyes closed, I would listen to music that would have enough energy and inspiration to get me through my eight round fight.

The soundtrack is not without its flaws, but with technology, I only needed to “burn” to a CD certain songs from the album.

The 80’s pop band Survivor actually had three songs for the movie, “Burning Heart” and of course repeating “Eye Of The Tiger” used also in Rocky III.  But Survivor’s third song ended up cut from the movie and the soundtrack.  Not really sure where it would have fit, which is why it was cut, but it was a great song nonetheless.  It was called “A Man Against The World.”  Definitely written for Rocky, it is a constantly played song in my playlist.

The other hit from the movie was James Brown’s “Living In America.”  It was a rejuvenation of Brown’s popularity, but the song overall was as cheesy as the movie.

But there were two songs that did not attract as much attention, but to me were inspiring in their lyrics, and the music just lit the spark I needed to push harder, just as it did in the movie.  Robert Tepper’s “No Easy Way Out” was played during a time that Rocky was now questioning everything he had done, whether it was worth it, because of the ultimate price paid.  The other, John Cafferty of the Beaver Brown Band sang “Hearts On Fire” during the cliche training montage.  The song is heart pounding and sounds victorious.

And as usual, there are instrumentals that inspire me to turn the volume as high as it can go.  And just like Bill Conti’s “Gonna Fly Now” in the very first movie, Vince DiCola’s “War” and “Training Montage” ended my chemotherapy appointments.

But my appreciation for this odd choice did not stop in 1990 and my remission.  Every time I have had to deal with a health issue resulting from the late effects of my treatments, requiring rehabilitation or starting over, it is this same music that I turn to.

“Yo Adrien… I did it!”

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