Paul's Heart

Life As A Dad, And A Survivor

Remembering A “Rival” Survivor


Last week, I found out that a fellow long term survivor of Hodgkin’s Lymphoma had passed away suddenly.  I am going to apologize in advance for what may seem like a scattered and unorganized post.  Normally, as I do these posts, remembering fellow survivors, I am a bit more put together with my thoughts.

Those of us who knew Michele, were all caught off guard by the news, and likely discovered by mistake.  In our circle of survivors, it is not uncommon for us to disappear into the background, and just watch what is going on.  Combined with the all-consuming issue of Covid19, we found out Michele passed away long ago, just as states were beginning to set restrictions.  Her last post was actually two days before she passed away, showing no awareness that her end was near.

Typical of one of us, a long term survivor of Hodgkin’s Lymphoma, she struggled with many late side effects from the treatments that cured her of her cancer.  Some days were more difficult than others.  She found most of her strongest support among our group, because with all of us dealing with similar issues, we not only understood what she was going through, we knew what she was going through.

Just before Covid19 took over, she and I had a discussion about two issues that we shared (I will not state them out respect for her privacy).  But as I had experienced these events, and their causes, she found direction to assist her doctor in directions to pursue not only answers, but hopefully management.  Multiple trips to the hospital for the same thing, left her frustrated, as it does all of us.

Michele was not really complicated.  She had two young children as do I.  They were her world.  And now their mother is gone, a feeling I do not wish on anyone, including my own.  Unfortunately the reality for so many of my fellow survivors.  But any strength or stamina she had, it went to her children.

Over the years, we did have other little “non” Hodgkin’s related banter, especially when she found out I was a Seattle Seahawk fan.  Being from New England, she was all to happy to remind me of the awful finish to the Super Bowl where her Patriots ended up victorious due to a huge coaching error.

There were a lot of fun things written about Michele in her memoriam that showed, in spite of all of the health struggles she had, she still made the most of her life with her children.

But as for us survivors, the suddenness of her passing, in spite of her struggles, and not really knowing what ultimately caused her passing, has shaken us.  We know our health is fragile, and we do not take our days lightly.  Even when we are not having our best day, we do not want it to be our last.

Our group of survivors continues to grow, and I can only wish that they would have had the chance to meet Michele.  Like I said, she was inspirational to so many.

Dinosaurs To Degrees


I have always enjoyed singing to both of my daughters.  I sang the classic lullabies to them, as well as contemporary songs, that as a disc jockey, I came across that would always be a reminder to me whenever I would hear them on the radio or elsewhere.  At least early on, I know my daughters enjoyed the entertainment.  It was soothing to them as they fell asleep.  Not so much as they grew into teenagers however.  They know that I can sing, it is just, just as I directed the lullabies at them, if I sang a song and they were with me, I was always going to dedicate the song to them bringing them a house-full of eyes staring at them, in the warm, endearing moment it was meant to be.  And these are always songs that reflect the daddy/child relationships.

John Berry is a country music singer, and recorded one of those songs that I sang to my daughters as babies.  The song was called “How Much Do You Love Me.”  The song told of the relationship between child and father from toddler to teenager to adulthood.  Powerful descriptive lines:

“Dad, I’m playin’ dinosaurs.  ‘Do you want to be one too?’
I set my grown-up world aside and said: ‘I’ll be right there'”

“She called me from a party late one night, her junior year
And bravely gave an address through the stories and the tears”

“Children grow and years go by moms and dads get grey
Little girl’s get married and give their dinosaurs away
They’ll live their grown up lives and call their daddies now and then”

And each chorus sings the same message as the daughter asks her father and then the father answers her back:

“How much do you love me?”
“How much do you really care?”
I touched heart, spread my wings, and said:
“All the way to there”

I would play this song annually at a particular Daddy/Daughter Dance for a family friend.  It did not take long for me to learn how to sing it, and to this day, the song holds a special meaning to me.

My daughters have always been my priority.  I know that I always have two sets of eyes watching me, as I try to set examples for them, to be their role model, as a father should be.

I cherished every moment I had to play with them, read to them, and yes, sing to them.  One fact that I knew I had to quickly accept, they would not always stay young.  But I made sure that they learned to enjoy life, and have a lot of fun.

As they have grown, one of the things that I have been pleasantly surprised by, they both have a great sense of humor.  Yes, they have all of the other traits that parents want their children to have, but they have picked up some of my mannerisms from imitations to snarkiness.

More important than picking up my sense of humor, they are at the stage where they have to learn that decisions they make today, may have an impact on their lives tomorrow, especially when it comes to college.  I try to impress upon them some of the things that institutions look at when approving students, that they may not realize a big deal after all.  School attendance, being caught even as a bystander in a situation requiring legal enforcement, to participation in outreach and social organizations.  All the while, behind the scenes, I know, having been a teenager eons ago, my daughters will face some peer challenges along the way.  And it is important to me that my daughters know that I will always be there for them, no questions asked, no matter what.

There is so much happening at this stage that I wish we could just take a break and go back to playing with dinosaurs again.  But before they are on their own, they need to learn how to handle money.  I want my daughters to learn the respectful way to challenge authority, and when it is necessary.  It is easier to do this now with a school course, than it would be with an employer.  It is important to me that they learn to diversify and look for as many examples to help them form their own opinions.  And yes, one of the most important lessons, when to take on a fight, and when to walk away, and how to take on that fight if that option is chosen.

And as quickly as their childhoods will be past, so will their teenage years, and then the “dinosaurs” will be just a memory.  And I just hope that I have done all I can to prepare them for this world and all that they will have to contribute to it.

But the one thing that I want them to always remember, is how much I love them, and always have, as I “touch my heart, and spread my wings and say, all the way to there.”

My Multipurpose Mask


To look at the picture, and realize that I live in the sunny state of Florida, you could ask yourself what in the world am I doing wearing a ski sleeve?  A perfectly legitimate question as southwestern Florida typically does not see “cold” (by Florida definition, anything below 70 degrees until January and then we wear socks with our flip flops).

In 2020, as I take my daily walks, I normally would be wearing a standard cloth face mask as many people are wearing to protect themselves from Covid19.  But this morning, I woke up to a chilly 48 degrees (it was cold enough without hearing the wind chill was in the 30’s).  My cloth mask was not going to cut it for me this morning.

My green ski sleeve came in handy decades ago on the many mountains I got to ski when I was able to.  Living in the northeast of the US most of my life, it also helped a lot when it came to the frigid temperatures of winter.

But as the close of the first decade of the new century approached, a condition that had been developing over the years, courtesy of side effects from cancer treatments for Hodgkin’s Lymphoma.  It is kind of difficult to describe, as it is more of an onset, more than an “attack.”  The condition feels similar to an asthma attack, yet does not respond to asthma medication.  The duration lasted depending on the weather conditions and it did not matter hot or cold.  Recovery was even determined by the climate, indoor and outdoor.

Caused by damage resulting from radiation therapy and the drug Bleomycin in my chemo cocktail, I have several diagnosed issues with my lungs.  I have something called radiation fibrosis, restrictive lung disease (currently at 76% capacity – my lower left lung lobe is no longer functional or “dead”), and I have several unidentified spots on both lungs, being watched for potential development into lung cancer.

High humidity, cool windy air, and cold temperatures all produce the same effect with my lungs, almost a “hardening” or loss of flexibility, making it difficult to breath, often resulting in me taking rapid short breaths as I struggle for air.  The only thing that helps me resolve this, is getting into a climate controlled environment, either air conditioned (if dealing with heat and humidity), or at least a comfortable low 70’s internal temperature.  Once inside, I must sit, and slow my breathing down, allowing the comfortable internal air to get into my lungs.

How long these episodes would last would depend.  From my house to the car, it was not a problem.  But from the ten minute walk from the parking garage to the building that I worked in, was problematic.  There were other contributing factors as well, such as stress load, if I was starting my day off in a bad way, that would also impact my breathing.  Once inside, it would take anywhere between 30-45 minutes, though there were at least a handful of episodes that lasted over an hour.

Complete pulmonary function testing and imaging only confirmed that I do have limited lung capacity and functionality.  These episodes are not fun, and definitely not convenient, especially when you have a timeline you have to meet.

Having the knowledge that I was likely to face an episode, and that I knew how to deal with one if it occurred, and I could count on it to be resolved, the only thing left to do, was to prevent it.

When it came to dealing with heat and humidity, there was not much I could do to avoid the conditions, other than remaining indoors when conditions were not favorable.  Definitely not convenient, but my employer appreciated the fact that I spent a lot of time, reliably, working overtime hours just so that I did not need to take the long, hot, and humid walk to my car.  At home, in spite of having a cozy inground swimming pool, there was no relief as long as my head was above the water, and I was breathing the hot and humid air in.  There was little I could do, other than just follow my plans to deal with the episodes when they came on.

Cooler weather was a different story.  Though my ski scarf had spent its last many years in storage, I began to use the scarf to filter the cooler air before it got into my lungs.  But the image of me wearing this scarf, when the temperature was only hitting below sixty degrees (with heavy wind), or below fifty degrees or lower without wind, I got my balls busted a lot by my co-workers.

You see, I was known for not dressing appropriately for the cold weather, wearing shorts as late as January, in 20 degree weather.  But it had gotten to the point, with either cool blowing air, or frigid air, I needed to do what I could do, to prevent these episodes from happening.  And it helped.

So, years ago, I moved to one of the hottest and most humid states in the country, an odd move given this lung condition.  There is no ideal climate for me to live in.  But during the hottest summer months, I do spend most of my time indoors, in the air conditioning.  My time spent outdoors if I must, is limited usually from car to building, and almost never during peak heat and humid conditions.

But during the Fall and Winter months, unlike back in Pennsylvania, I have reduced the frequency of the colder attacks nearly 85%.  The most extreme temperatures I normally have to deal with, end up briefly in the fifties at most two weeks, at which I pull out the ski scarf.  It does come in handy for sure whenever I have to travel north during the colder months.

Yes, it looks odd, wearing a ski scarf in southwest Florida, but it serves its purpose, not for how it was intended.  Warmer temperatures will come back in another day or so, and then it will be back to the cloth mask again to protect me from exposure to Covid19, another unintended use for those masks.  Just like my ski scarf, it serves its purpose.

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