Paul's Heart

Life As A Dad, And A Survivor

18 Dec 2022

A “Paul’s Heart” Christmas Carol


Every December, I am faced with the same situation as my birthday falls this month, renewing any or all of my driving information. My license is good for a number of years, as is my handicap placard, but my registration gets renewed every year, even though I have the option of multiple years. I choose not to do multiple years, because if something were to happen to my car, and I would need another, that would be a second registration I would have to pay. This scenario played out a few years ago, when my car was T-boned. The DMV, Department of Motor Vehicles does not give you a pro-rated refund for the time you no longer have the car, nor do they give you credit for the time left towards a replacement car.

There are very few places that you will wait longer in a line for service than the DMV; lines for rides at Disney, the post office in Naples during Christmas season, and a customer service line for any airline following the cancellation of a flight. But with a fully charged cell phone, I felt I could keep myself entertained for a potentially long afternoon, waiting to renew all three of my driving needs. Before I dove into my phone, I just looked at all of my paperwork to make sure everything was in order. For some reason, I immediately honed in on the “expiration dates”, or how long each would stay valid. This is when my mind started to take me down a path I try not to think about. Will I still be around when these things need to be renewed again?

As a long term survivor of Hodgkin’s Lymphoma, dealing with a plethora or multitude of late developing side effects, I live my life holding a “Pandora’s Box” underneath a “Sword Of Damocles.” I know most if not all of the health issues my body deals with in regard to the late side effects from my treatments. The only thing I do not know, is when each will become a problem to be dealt with immediately. One problem gets dealt with, another problem needs attention. And really, as bad as all this is, as long as I have skilled doctors who listen to their patient, me, and the knowledge I have about what I have gone through, I have managed to get through everything.

But there is a darker side to my survivorship, and shared by many other survivors, a stronger recognition of our mortality. Because long term survivorship is still a relatively unknown field in medicine, though medicine is beginning to catch up, unfortunately, not fast enough for us. With the internet and social media, fellow long term survivors can share their experiences with others, allowing us, in a way, to teach or train doctors how to handle patients with our needs by learning from survivors. In the circles I associate with, there are well over a thousand members on one of our social media groups alone, located all over the world.

Many of us survivors develop close bonds to others, even meeting other survivors in person. I can tell you there is no other feeling, that seeing someone in person, who is experiencing similar to what you are going through and the understanding that is shared and felt.

I mentioned mortality earlier. Most of the other survivors I know, we all know, that regardless how long we have survived our Hodgkin’s Lymphoma, while a great number of survivors may be fortunate to never have to deal with any late developing side effects from their treatments like I have, there are many who have. And then there are those who are completely unaware as to the mysterious things that are happening, unable to put two and two together, to connect the dots between declining health and late side effects. Because they just do not know, and were never told it could happen.

In any case, if we are lucky, we have a doctor that has knowledge and understanding of our unusual health history. We are even luckier if the health issue de jour that we are dealing with, can be dealt with and healed. And then there are times, that our luck turns south, and the prognosis is not good for a recovery. And then, there is the everyday dangers that even healthy people face if we overcome our health issues, crossing the street, driving a car, slipping in the bathtub, also known as a sudden accident. The dangers for us long term survivors is that our bodies have been through so much trauma, we are already at a disadvantage for a doctor trying to save our lives, with our deteriorated body conditions. The most glaring of the facts of our mortality, while the survival number of years is in the decades, that does not mean well into our years of life. In fact, as one fellow survivor once wrote, many do not reach past the age of 60. Combine that with the longevity of my paternal side of the family with an average age of 55 years old, and I am more than aware of the odds against me.

I have laid the groundwork. I am at the DMV. I am aware of my unique mortality. I am approaching another year older, another year older as a cancer survivor. While I wait for my number to be called, for the DMV that is, not the mortality, my mind begins to wander. I can visualize someone, looks like my late father. Acknowledging a conversation that we had with each other when he was alive, he reminded me in this thought, that I was a survivor, there is no such thing as giving up.

My father was absent most of my childhood, yet he was able to remind me just how “good” my life turned out to be. No, it was not a “Norman Rockwell painting,” but I did okay with what I had and who was not in my life.

And then we began talking about my early adult years, in particular, the years that I fought Hodgkin’s Lymphoma. We talked about my later years, with all the health struggles I had faced, but he would remind me, all the lives I had touched, including his as he faced his own battle with lung cancer. The fact was he reminded me, I had done so much in my life, not just for me, but for so many others.

And then the image faded away. In fact, not just my dad, but all the things we had talked about, were all gone. While I did not have a “grim reaper” in this moment of wandering, it was clear where my mind was. I am between two age medians, my paternal average of 55 years of age, and the seeming equivalent to climbing K2, reaching age 60 as a cancer survivor of over thirty years.

Tomorrow is my birthday, turning 57 years old. The awareness of my mortality is both a blessing and a course. So far, having the doctors that know how to deal with the issues from my late side effects, has kept me alive. Constant surveillance keeps my health from getting to the life and death moment as happened in 2008. As they say, what is happening to me cannot be reversed, but it can be slowed down, and managed (to a degree).

But I have a knowledge of so many other survivors who have passed, and while many have passed as a direct link to their late effects, there are also others who passed away due to an otherwise common event.

Finally, there will come a time, that all the things that doctors have done to save my life over the decades, will need to be done again. My history and treatment of Hodgkin’s Lymphoma, made every one of these original surgeries high risk for complications and death. Having to do any of them again, the risk is even greater of a complication.

No, I do not need that ghost of future standing in front of me. And if I had the chance, I would give him the push into the grave, because in my heart, I am far from ready to have this thing called life, end. One time unthinkable when this all began, getting to watch my daughters grow, I have seen them come to the end of high school, and begin college. And there are more milestones that I want to see that involve them. And at this point, the way I feel physically, I believe I will get to see those days.

But then there is a point when I say, no more birthdays, the I will not get older. No more new years so that I will not pass another year of survivorship. Just let me ride this thing out to watch my daughters do what I have dreamt their whole lives to do.

It is important that anyone reading this understands, I do not go through my life, worried or thinking I am going to die every day. Far from it. Each morning, I wake with the intention of seeing another day. I have so much I want to do. It is the reality of the knowledge I have, that just reminds me, I am not the one in control. To quote the lyrics from the Bon Jovi song “Live Before You Die,”

“I made mistakes I caught some breaks. But I got not regrets. There’s some things I don’t remember, but one thing I don’t forget. When you’re young you always think the sun is going to shine. One day you’re going to have to say hello to goodbye.
Shout it out let someone somewhere know that you’re alive.
Take these words wear them well, live before you die.
You learn to love to live. You fight and you forgive. You face the darkest night. Just live before you die.”

Posted in Adoption, Animals, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
06 Dec 2022

A Familiar Conversation


I am pretty sure, that had I recorded the conversation, all I would have had to do was press “rewind,” and then “play,” and the exact conversation would have been heard.

With my older daughter’s 1st semester officially in the books this week, my younger daughter is in the middle of her second semester of her senior year. As I always do, I am busy planning the next visits so that they can be booked following their Christmas visit with me.

The conversation is the same, turning adult age, aging out of the custody agreement, I leave it up to my daughters to decide if they want to make a particular visit or not. I know, and respect that they may have plans, especially in that senior year of high school. While I have the conversation with my younger daughter, there is a slight twist to the next several visits. They will likely be without her older sister joining her, as not only do they have different social priorities, they obviously have different school schedules.

I had my “Cats In The Cradle” conversation with my older daughter, familiar to the Harry Chapin song:

“Well, he came from college just the other day
So much like a man I just had to say
‘Son, I’m proud of you, can you sit for a while’
He shook his head and then said with a smile
‘What I’d really like, Dad, is to borrow the car keys
See you later, can I have them please’

And the cat’s in the cradle and the silver spoon
Little boy blue and the man on the moon
When you comin’ home son
I don’t know when, but we’ll get together then, Dad
You know we’ll have a good time then.”

She must budget her time off between myself, visiting her mother, her friends, and her boyfriend. Through her college years, this means I am likely to see her, twice a year, along with any Facetime conversations. I am actually handling this pretty well.

My attention turns to my younger daughter. We are all anxiously awaiting to hear from the colleges that she applied to, and scholarships she has already applied for. That hard part is done. And then came the speech.

“The time is going to fly by now. After Christmas break, you have five months left of your secondary education. And the time is really going to go fast. You cannot afford to put anything off, because you are going to be getting communications from the college that you decide to go to, as well as tasks that need to be completed before you graduate. And then there are things that you and I still need to get done. There will be little time.”

I encouraged her, “if you don’t believe me, ask your sister if what I told her, the same exact thing, if what I said was true.” Of course it was.

The difference between the ending of the song, and where the chapter with my daughters and I end, is this is yet another chapter in my cancer survival that I did not expect the chance to see. And the milestone of seeing both of my daughters having graduated from high school will be realized. I could not be more proud of both of my daughters. And sweeter than the longevity of my survivorship of Hodgkin’s Lymphoma, is having gotten to watch both of my daughters become the women that they are.

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

Post Navigation

← Older Entries
Newer Entries →