Paul's Heart

Life As A Dad, And A Survivor

03 Dec 2022

A Disappointing And Shocking Discovery


If there is one thing that I have been consistent at as a parent, it has been taking advantage of “teachable” moments when they arise. There are no better examples than those that are occur as they are happening. One of those moments is actually happening right now, and to be honest, I had no idea the situation was that bad.

I am of course referring to the looming railroad worker’s labor strike. Up until this point, all I really knew about railroads, were there were four of them in Monopoly, a favorite television character for children named Thomas, was created after a train engine, and I could enjoy a scenic ride into New York City on a train. Obviously, our railroad system is much more important than how minimal it appears in my mind. The possibility of a strike by railroad workers, just weeks before Christmas, would be devastating for everyone.

The first thing that comes to mind when you hear the word “strike,” is better pay. Nothing gets under the skin of someone who is not part of a union more, than hearing a group of workers striking to get more money, something that a non-union member truly cannot appreciate the difference being in a union would make. And if you look at the situation with blinders on, a reference to equipment horses wear to keep them looking in only one direction, the pay raise being offered looks outstanding and really, shocking, an immediate 14% increase with an increase to 24% by the year 2024. Now, if you look at just those percentages, it is easy to think, “sign the damn contract, how greedy do you have to be?”

There are two things to consider. First, it has absolutely nothing to do with greed. A normal union increase in wages can range from 1-5% as long as contracts are agreed to and the flow of the labor agreement is not interrupted. But the railroad workers have been working without a contract for over three years. And for the contract to only cover up to the next two years, financially, this contract is nothing more than “catch up.”

It is the second thing that caught my attention, working conditions. Improving working conditions is one of the biggest and most important features of belonging to a union. Just ask a coal miner, a police officer, a teacher, or a railroad worker. One of those working conditions that is being fought over, to the point that our government has actually had to get involved with, something that does not have a good history record (look up “air traffic controller strike”) in our country, is paid sick leave.

At one point, I belonged to the United Steel Workers Union. And if there is one thing I would think that any union would have included in their contract for their members is some sort of sick time policy, especially for one as vital as the railroad system. But railroad workers do not get sick time. In most cases, even to take unpaid sick time, you know, like when you are fighting a serious illness such as cancer, could result in reprimands up to and including termination. How is this possible, that one of the most powerful unions, one of the most vital unions to our economy, does not have a necessary benefit for its members?

To be clear, a company that provides sick time, does not guarantee that an employee will not get reprimanded or fired for using sick time. Over the decades of my life in the cancer world and survivorship, I have seen so many different situations on how sick time is handled from the truly compassionate to the reprehensible. The employer I worked for when I was diagnosed with Hodgkin’s Lymphoma 34 years ago, bent over backwards to make sure that I would not have to worry about lost time, hence, lost income, or losing my job. A different employer years later, provided no benefits, but simply allowed you to take whatever time you needed to get better or heal. But it was my last employer that shocked me to the level they would go to, to restrict sick time being used.

Following my emergency heart surgery in 2008, my doctor had ordered me out of work to allow my rib cage to heal properly, six months. Healing time took longer for patients exposed to radiation therapy. But as I approached my third month, I received a notice, and to put it in perspective, I was working for a major pharmaceutical company, that if I were not to return to work by the end of the following week, I would be terminated. I had a doctor ordering a recovery period, that my employer disagreed with, and per department policy, would begin the procedure to terminate my employment if I did not go against my doctor’s orders.

If you have followed “Paul’s Heart” long enough, you know I am a patient and survivor advocate, and one of the things I advocate for are employee rights. Long story short, I made sure my supervisor knew all about the Family Medical Leave Act, as well as the Americans With Disabilities Act, and that in no uncertain terms, I would fight to keep and return to my job when able. Anyway, no pun intended, I clearly have gotten “off track.”

Look, no one will argue, business owners need their employees to show up for work. It does not matter if it is a major employer like the railroads, or a small “mom and pop” store. And though no employer should be expected to absorb the extended costs of a lengthy absence, hence what short term and long term disability are for, it should not be unreasonable for an employer to provide a minimal amount of sick time, for example, three to five sick days per year, paid.

Finally, getting to the “teaching moment” for my daughters, it falls on the employee however, not to take advantage of that benefit, but rather to use it as needed. And if it is not needed, then do not use it. All too often, an employee might call out sick, because their employer denied a request for personal time off, or an employee just felt like “skipping” work that day. And no one can blame an employer for getting upset for the business interruption to upset the employer.

Up until my health decline, my daughters only knew one thing. I rarely called in sick. Numerous years, I would actually earn “perfect attendance” rewards. I had personal time I could use for necessary personal business, but I never used sick time to go on a vacation or just skip work for the day. As a parent, I led by example, and my daughters were kept in school. I did not, and do not believe in taking my daughters out of school to go on family recreational trips. As my daughters approached the end of their secondary education, I encouraged them, that attendance is an important factor with college plans and scholarship applications. Why is all this important? Responsibility and reliability. No one can blame an employer, or a college or donor, to expect a commitment, reliability. It is too easy to fall into the trap of impulsively abusing absence policies. That is why it is best not to start, which I have often stated to my daughters over the years. You never know, when you are going to have a serious situation to deal with in regard to attendance, and your reputation might just be critical to keeping your employment.

I do not “have a dog in the fight” for the railroad workers, other than the economic impact of course. But I do not think it is that much to provide employees with even a minimum and respectable number of paid sick days, no matter what the employment may be. Better working conditions should contribute to better attitudes of workers, which should correlate to better efficiency and profit of a business. Just saying.

Posted in Cancer, Education, Family and Friends, Inspired By... | Leave a comment
22 Nov 2022

A Concert Ticket For Under $10?


I can no longer use risk exposure to Covid19 as a reason for avoiding super spreader concerts. Unless the concert is broadcast on a premium channel or streamed, there is no way I would be able to afford in person any more. It should not have taken Taylor Swift to become the poster child for a ticket sales monopoly and legalized scalping to bring this problem to light.

Growing up in the Lehigh Valley of Pennsylvania, we basically had two local venues to see concerts before making the farther drive to Philadelphia. We had the Allentown Fairgrounds and Lehigh University’s Stabler Arena. Both provided great seats and a great concert (depending on who the band was). The poster pictured above, was a few years before I started going to concerts. Needless to say, I am sure this was a great concert. Two things stand out on this poster. The first, there are two prices for tickets, $6.50 if you bought them in advance, $7.50 if you bought them at the gate, or as the poster warns, “if available.”

The second, “Ticketron, in a font demonstrative of computer language, was the ticketing agency for this concert. Ticketron was a computerized ticket purchasing company started in 1960 until 1990, when it was taken over by… wait for it, Ticketmaster. However, you did not have to buy the tickets through Ticketron. There were several ticket windows outside of the Fairgrounds that you could walk up to, and slap a $10 bill on the counter for a ticket, and avoid all the other fees.

A few years later, I would purchase my first concert tickets. I saw Def Leppard at the Allentown Fairgrounds, and Chicago at Stabler Arena. Being a teenager, I did not have a credit card, so using Ticketron was not an option for me. I had to buy my tickets at the box offices for each venue. If memory serves me correctly, I paid less than $15 for each ticket. Also worthy of note, I only paid the price of the ticket and the state sales tax.

In 1984, a new standard had been set for concerts, courtesy of Bruce Springsteen, one of the first artists to institute a “ticket purchase limit,” due to the popular release of Springsteen’s “Born In The USA” album. Fans would line up overnight for chances to purchase the limit, if I remember, six tickets, or call Ticketron. While purchasing the tickets over the phone had its conveniences, there was also a major inconvenience. You had no way of knowing the quality of the seats your were purchasing unless you were familiar with the venue. But if you purchased your tickets from the ticket window, you had a map layout of the entire venue, to see what you had to choose from. Today, you get offered whatever tickets Ticketmaster presents to you. Don’t like those tickets, back out, and try again, and again, and again. Eventually you might get good tickets, or maybe none at all. Sold out, and then onto…

The limit on purchasing tickets did not have as much to do with limiting anyone from buying tickets, but rather to prevent ticket “scalping.” Scalping is the act of re-selling the tickets at an increased value above the face value. There are no federal laws to prevent making a profit off of re-selling tickets. Left up to the states, some states, like New York, New Jersey, even Florida have laws against making one penny above the face value of the ticket. Some states, like Texas and Ohio, have no laws preventing scalping. And Alabama? Well, they have a scalping law, but it includes having to prove that the person scalping, had a history or reputation of being a scalper.

In the 1990’s, Ticketmaster gobbled up Ticketron, which combined had 90% of the computerized ticketing business. And from there, Ticketmaster cleaned up any other smaller ticketing agencies, until it had its monopoly. Government regulations allowed this to happen. We allowed this to happen. And that is one reason ticket prices have skyrocketed, no competition. But there is another reason.

Remember scalping? In the old days, as you arrived at the concert, you would have two types of people outside, those looking to buy a ticket (unable to before hand), and those willing to conveniently “sell” their tickets, at a higher “lack of convenience for you” price. Scalping. Today, it has been modernized, and seemingly, still legal, even in the states with laws prohibiting it. Just Google the word “scalping,” and the first three sites listed are not for “what is scalping,” but rather, three “re-selling” agencies, including the most popular of them, Stub Hub.

For the most part, no one has really paid attention to the prices on Stub Hub whether for a concert or professional sports. But now thanks to the Swift fiasco, Stub Hub is front and center with Swift concert tickets selling well into the thousands of dollars. Scalping. But as I said, scalping is another reason for ticket prices increasing. Because now the artists see the profits being made from scalping off of their performance, and feel, why shouldn’t they get to benefit from it, leading to increased ticket costs. No one can blame the artist. But I have no problem saying either, no one is worth thousands to see perform. And I do wonder, of these people shelling out these prices, are they also the ones complaining about the economy and inflation? Because this is the shit that contributes to it.

I don’t recall how much I paid for my last concert tickets, though I know it was under $100. And that was in the 2000’s. But back in 1994, the band the Eagles reunited after they swore Hell would have to freeze over before they would perform together again, and just like that, Hell dropped to 32 degrees, and the dawn of $100 tickets was born. A 3-day ticket to the original Woodstock was $18 in 1969. In 1994, tickets to the 2-day Woodstock festival went for $120.

I have seen my share of concerts in my life. As a parent, I was prepared to have to attend concerts with my daughters and bands that I really could not stand such as One Direction, Justin Bieber, and BTS, and yes, Taylor Swift. But my daughters, having been exposed to all genres of music, are drawn more to the older acts, at this point, appearing to be nothing more than tribute bands, barely holding on to any remaining original members, most now in their 70’s. Don’t get me wrong, bands like Foreigner, Styx, and Journey still put on a great show. I would just say not worth all the fees that Ticketmaster adds onto the price of a ticket.

I am happy for those that have been fortunate enough to find the goose with the golden eggs. Have a good time. But for me, I must relegate to concert DVD’s, streaming, and rockumentaries. And I am okay with that.

Posted in Education, Family and Friends, Inspired By..., Recreation | Leave a comment
20 Nov 2022

Things My Daughters Have Seen


I have close to 300 stories “prompted”, just sitting in limbo. I decided to just go back to the oldest one sitting in my cue, and see if I could finish it. To my surprise, I had only the title started with a note on the topic, referring to things that my daughters have witnessed during my survivorship of Hodgkin’s Lymphoma. As it turns out, this post actually connects to something that just happened recently.

My youngest daughter was applying for a specific scholarship for her first year of college next year. She was doing so from a unique perspective as the topic dealt assuming it was the applicant herself who the essay would be about. The subject dealt with dealing with cancer, how it was overcome, and any impact on her life. My daughter has never had cancer, and I hope with every fiber of my being that neither of my daughters ever have to face cancer. But cancer has had an impact on her life, her entire life.

Obviously neither of my daughters were even thought of when I dealt with Hodgkin’s Lymphoma back in 1988. As they grew, and learned of the word “cancer,” there would be occasional small, appropriate conversations about “what their Dad went through.” It is always a difficult thing to decide, what and how much to tell a child about cancer, of course depending on age. Up until 2008, just having started school, both of my daughters were already sharing in classroom discussions that their Dad was a cancer survivor. They even knew the specific cancer to bring up. But the limited knowledge was by design.

As my daughter began to conceptualize her scholarship essay, on how cancer has impacted her, it opened a very uncomfortable door for her. Up to this point, we have never really talked in great detail about my health events that occurred due to the late developing side effects from my cancer treatments. All my daughters really cared about up to a certain point, was that Dad always came home. The details were kept to a minimum, the part of the body effected, and that it was fixed. But now nearly fourteen years later, memories of what she witnessed, and details of what actually happened, and could have happened, finally came to light. My daughter finally learned how close, several times, that she came to losing me.

The essay was not just about the actual events of what had happened to me each time, but the disruptions of her routines, the need to change plans, someone other than her mother or father having to pick her up from school, and all too often, what the inside of a hospital looked like. There were times that I was “not at home,” sometimes for days, as I was in the hospital, no explanation given just “Daddy will come home.”

But as I have one daughter of adult age, and the other almost, it has become important for them to understand what has happened to my body over the years, and what potentially lies ahead. This scholarship essay was finally the opportunity to discuss and reveal the unknown for them, and come to learn, contrary to what they had been told by some of their family members, that their Father has some health issues of great concern.

And so we began with the big one, my first heart surgery. This could have easily been the end, in reality it was just the beginning. In the “I was going to die” episode number one, my younger daughter aged three at the time, was finally told that I had what was nicknamed a “widow maker” blockage of my heart. At first there was confusion for her, because she knew what the word “widow” meant, but somehow this would have resulted in the death of her mother. After clarifying for her, she learned what I had been told by my cardiologist back in 2008, “it was not a question if I was going to die from a fatal heart attack, but when.”

Both of my daughter had childhood friends who lost their Father at a young age, also due to cardiac issues, but not cancer treatment related. My daughters could not relate to their young friends what it was like to have to visit their Father’s grave, not to spend holidays with their Dad, or do things with each other. My daughters knew their friends’ Father was dead, but the children really never let on, that it affected my daughters any further than the knowledge.

But now, as my daughter and I were on Facetime working on this essay, the potential loss of her own Father became a reality to her, of course not wanting to find out what it was really like, as with her friends.

In 2008, I needed to have an emergency triple bypass, that was downgraded to a double bypass (a big mistake later realized in 2019). It was the first time that I was ever away from my daughters. It could not have been under the worst possible circumstances. Again, faced with the “what and how much” do you tell a three and five year old, they were told that I was just staying overnight somewhere, and I would be “fine,” the first of many times my daughters were deceived about my health, and not by me. Four days into my recovery, still in the hospital, my daughters were brought in to see me. I was still connected to machines, and had at least one hose still coming out of me. My older daughter was not intimidated by anything, and quickly came to the upper part of my hospital bed, encouraged to go easy, that I had a huge “booboo” in the middle of my chest. However, my younger daughter, was clearly frightened and upset, having never seen me laid out like I was. After about a half an hour, she found her way, nestled against the left side of my upper body. Her excitement when I finally came home could not be contained.

My older daughter remembers most of that time period, my younger daughter does not. But now that it had been discovered that I had other issues related to my treatments, there would be more time away from my daughters,

In 2010, my daughters were confused when their “Poppop” was picking them up from school. I honestly do not know what they had been told. I was being rushed to the hospital, bleeding, and in extreme pain.

Then two years later, and for the first time, an episode occurred that my younger daughter is able to remember. At 3am, I was being rolled out of my house on an ambulance stretcher, screaming in intense pain, just having had a bout with uncontrolled vomit. I do not have many memories of that night, as I am pretty sure I was hallucinating. But as the paramedics rolled me out of my bedroom, there at the top of the steps, were my daughters, then aged 7 and 9, wide awake in their pajamas, standing next to a police officer who was assisting the emergency.

My daughters were never told how serious this situation was. But according to my doctors, I was dying from sepsis. My doctor, expressing frustration with me, chided me, “with as high as your lactic acid levels were, you were septic likely for at least 48 hours! What the hell took you so long to go to the hospital?” A lactic acid level of 4mmol/L is indicative of a sepsis infection. And at that level, the mortality (a.k.a. dying) rate is near 30%. I pleaded with my doctor, I felt completely fine when I went to bed that evening, other than being a bit exhausted from the hectic week I had just gone through. Unknown to me, I had developed a form of pneumonia, called “aspiration”. Unlike other pneumonias, following illnesses, aspiration pneumonia is brought on, by inhaling food, saliva, or stomach acid into the lungs. For the purposes of this post, I am not going to get into the technicality of this episode, but this event was brought on courtesy of late effects from my treatments.

I would have a relapse of aspiration pneumonia nine months later as doctors tried to figure how to deal with my esophageal issues causing this. But again, my daughter was hearing for the first time with this particular event, I had almost died. But again, some around her continued to blatantly lie to her, that nothing was wrong.

As both of my daughters got older, I continued to have health issues pop up. But now being divorced and not living in close proximity to them, and due to the complexities of custody, my daughters were no longer told when I had these extreme situations come up, for fear that my health would somehow get used against me in court to prevent me from seeing my daughters, and it did come up on at least two occasions, fortunately being ruled in my favor.

Just as the pandemic hit, I had to have two more major surgeries, that I felt needed to be kept from my daughters, for fear of being misrepresented by those close to them. They would only hear about them when I had recovered which of course only reinforced what they were being told, “your Dad is fine.” But a little over a year ago, I made the decision, as I said, with them getting older and needing to know, I let them know of my third heart surgery having to be done. And being apart from them, unable for them to be by my side in the hospital, courtesy of technology, I was able to Facetime them from the ICU, that they could see where I was, and learn what had been done. And I could see for myself, that they were at ease.

But it was not just medical events that they were faced with when it came to me, my daughters could actually see the toll that my cancer survivorship had taken on me over the years. Just a simple walk in the snow, would leave me gasping for air. I have lost the mobility of my shoulders from radiation damage, my daughters now “wrestle” me to assist dealing with their luggage when they come to visit. I know my daughters “get it.” They have been told most of their lives, by certain family members, that there was nothing wrong with me, that I was fine.

Now, as my daughter writes her essay, we both now understand how my cancer has impacted her life and will impact her in the future. As parents, we struggle what and how much to tell our children when faced with health crisis. And it becomes difficult when their lives and activities are impacted, and cannot understand why. This is why I encouraged her to go for this particular scholarship.

Posted in Cancer, Family and Friends, The Heart | Leave a comment

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