Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

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
18 Nov 2022

From The Beginning, “Over The River…”


Thanksgiving with my Grandmother. I certainly have many memories. For most of my childhood, I lived with my Grandmother and her sister (pictured on the left), and come Thanksgiving Day, that meant the most wonderful smell in the world. Unfortunately, that smell began wafting up to my bedroom early in the morning, as the two of them began to make the holiday meal to feed a total of ten of us. Our kitchen table on sat eight of us, so that meant…

the dreaded “kids” table, usually a fold up card playing table. We had another full dining area, with another dining table, but since there were only two kids, the folding table is where we were put. Regardless of being in a different room for the dinner, I still got my hands on my favorite, the dark meat of the turkey, mashed potatoes, sweet potatoes, stuffing, and something called “stuffing from the bird.” This is when you take some of the already mixed homemade stuffing (it was never boxed), and stuff it into the turkey as it cooks. It was the same stuffing that was being served separately, but cooked inside the carcass, the “bird stuffing” basically is marinated with the flavoring of the turkey, an entirely different stuffing flavor, and SO GOOD! And I cannot forget the homemade pumpkin pie and pumpkin custard.

Eventually I would get promoted to the full table, which by then, was able to squeeze ten around, so perhaps the kid table had nothing to do with the capacity around the main dinner table.

In high school, Thanksgiving would be delayed for us to be able to attend high school football games. The dinner was ready once I got home after the game. I discovered there was a big difference with smelling the dinner being cooked all morning, and walking into the wall of the aroma of the feast to come.

Fives years after my high school graduation, Thanksgiving would never be the same.

In October of 1988, I had an itch on the back of my neck. I had discovered what felt like a huge lump, much larger than what would have been left by a mosquito. I was confused by the mass, as I was a relatively healthy kid growing up. I made a call to the doctor, a general practitioner, who made the diagnosis of a swollen lymph node due possibly to the common cold. He prescribed an anti-inflammatory drug called Naprosyn and recommended I take a break from exercising to give my body some rest it likely needed.

Two weeks went by, and the swollen lymph node did reduce considerably in size. Back to the gym I went. As I am prone to do, I resumed back to the exercise routine I had been doing without easing back into it. The next morning, I believed I had paid for that judgement, as I had developed such a pain in my left armpit, whenever I stretched out my arm. Clearly, I had overdone it.

I had spoken to as co-worker about my new “injury” and how it was likely I was going to miss our city league basketball league game. I mentioned my frustration with having just missed two weeks of the season, and being left-handed and unable to shoot or toss the basketball. He had recommended his physician as being good with sports injuries, so I decided to give him a shot.

I gave him the synopsis of how I got to his office. I noticed a lump. Took a medicine for it. Took a break from exercising. Started exercising. Now my left arm hurts. Simple. Cause and effect, a sports injury.

The doctor examined me and was concerned about the lump more than my arm. The lump had increased in size again. I grew frustrated with the doctor as I was not there to see him about the lump, which had been getting better. I was there because I hurt myself weightlifting. He did some bloodwork, which showed nothing. And I recall throwing in his face, “of course, I know there is nothing wrong with my blood. I have a sports injury.” I would repeat that sentence several more times over coming weeks. The doctor was making a recommendation for me to go see a hematologist/oncologist. Now, if you do not know those terms, do not look them up. I will tell you what they are soon enough. I just asked the doctor, “do they see sports injuries?” and he replied no. But I needed to get that lump looked at.

I stormed out of his office. Two days later I had begun receiving phone calls from that doctor, leaving me voice mails, insisting that I follow through with his recommendation to see the specialist, who was not a sports doctor. I walked over to my co-worker, and asked what this doctor’s deal was, why was he bugging me? He told me, “my doctor is a good guy. If he feels something is of concern, I would trust him.” Looking back at that particular moment, would be a life-changing, life-saving conversation. I made the phone call to that specialist the next day, and made a humble phone call back to my co-worker’s doctor, to inform him that I was following through on his recommendation. Subliminally, I was not doing it because there was something wrong. I was doing it because I wanted to prove to this doctor that I was the one who was right.

It was a rainy, dreary Tuesday, just before Thanksgiving. I pulled in front of the clinic, and there was a sign in the front yard with the doctor’s name that I was going to see, along with the title “Hematology/Oncology.” Still not recognizing the titles, only knowing it had nothing to do with sports, I walked inside, soaking wet from the pouring rain. I was handed at least a half dozen papers to fill out which I thought was a waste of time for a sports injury. Truth be told, having never really been sick, I had never had to fill out all of these forms. As a kid, my mother did it for me.

When I finished, a nurse had taken me back to an office, not an exam room, but an office. Moments later, in walked a man who resembled actor Jeff Goldblum, The Fly version, not Jurassic Park version.

The doctor sat down at his desk, took a glance through my folder. There was no way I was prepared for next. “Hodgkin’s Disease is a very curable form of cancer, especially when it is caught early.” I felt like the cartoon characters when they are caught shocked or in disbelief.

I honestly do not remember another word he said from that point on. I know that I argued that I cannot possibly have cancer. I had a sports injury. He had not even examined me. Who the Hell did he think he was? I have never considered myself an angry or violent person, but for the first time in my life, I felt pure rage. I could not have gotten any further away from what I felt was wrong. I do remember ending up in an exam room eventually, but not a single word of what was said. Literally, I likely only heard “blah blah blah blah blah” from that point on.

A few days later, I had begun receiving calls from the prior doctor, urging me to go forward with additional bloodwork and a biopsy. Biopsy? I do not remember that discussion, but as I said, I tuned everything out the minute the other doctor began talking about cancer.

I went through that Thanksgiving weekend in 1988, with my mind in turmoil and denial. But two more “2nd opinions” later, I had finally been convinced that I needed to undergo the biopsy, if for nothing more than to prove I was right and every doctor I had seen was wrong. Spoiler alert… I was wrong.

Every Thanksgiving after that, this memory gets triggered, the exact scenario playing over and over on an endless loop. I am not able to stop it, or as some have suggested to simply “get over it.” The next Thanksgiving, 1989, I was undergoing chemo for a relapse of my Hodgkin’s, and for the first half of the 1990’s, all I could think around Thanksgiving, “is this the year it is going to come back?”

Simultaneously, as I struggled with my survivorship, the dynamics of our family traditional Thanksgiving dinner began to change. Talk had begun about the bond that at least held us together on this day, my Grandmother. We soon began to realize that without her, we would likely no longer gather together. And in 1998, my Grandmother passed away from her 2nd battle with cancer, this time, ovarian cancer. And just like that, we no longer spent any holidays together with each other.

In the beginning of the 2000’s, if there would have been any hope of me finally getting a grip back on the holidays, it was going to be with the arrival of my daughters. But by then, I had developed a mindset as an employee and provider, that I worked every holiday offered by my employer. That in spite of having two young impressionable children who of course would have loved to spend time with me, it was felt that it was more important for me to bring home the extra cash for the family. We could spend time with each other after I got home.

And there you have it, why holidays mean nothing to me, especially around this time of year. Because even though I consider myself blessed in over 32 years of survivorship, I still carry the trauma of what happened 34 years ago.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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