Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

36 Years. How Is This Possible?


The year is 1988. Popular music back then was “Faith” by George Michael, “Dirty Diana” by Michael Jackson, “The Flame” by Cheap Trick, and “Nothing’s Gonna Change My Love For You” by Glenn Medeiros (whose daughter loves trolling him on Tik Tok). Chuckie scared the crap out of us in “Child’s Play” in the movies. “Cheers” was the television show to watch. The price of gas was $.90 per gallon and a bottle of Coke was $.35 for a 16 ounce bottle. I remember everything from back then, clear as day.

But there was something even more memorable that occurred thirty-six years ago this week, I was diagnosed with Hodgkin’s Lymphoma (back then it was called Hodgkin’s Disease). The week before Thanksgiving and the start of the Christmas holiday season, and in less than a month, my birthday, I was faced in the fight of my life, cancer. I will not rattle off the entire history as it is not pertinent to this post. I have written enough about what happened and how I got through it on this blog, as well as publishing my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, available on Amazon (see the link below).

https://a.co/d/2JRZsZ3

Instead, I want to focus on the progress that I have been fortunate enough to have witnessed over the last four decades. Cancer patients often are led to believe that there is nothing to really look forward to much beyond a magical five-year mark of remission. It is almost as if, once that 5th year hits, and the cancer patient gets “discharged” by the oncologist, the rest of survivorship is unknown. And until recently, it was.

I almost feel like a time traveller, having travelled into the future from the years 1988-1990. I have seen the progress of diagnosing one of the more treatable forms of cancer, with a remission rate well into the 90% range. Back in 1988 (and beyond), biopsies and barbaric surgeries and tests (the staging laparotomy and the lymphangiogram – look them up to see what is no longer done) were used to diagnose and stage the Hodgkin’s. Today, a scan or a combination of scans are used, no longer requiring recovery time.

With such a high treatment success rate, it may not make sense to work on better and safer treatment methods, since the success is already there. But the truth is, the extreme high dose level of radiation that I was exposed to, and the extremely toxic chemotherapy drugs that were used on me, as well as most patients during that time, and previously, were known to be just as lethal as allowing the Hodgkin’s to just run its course. So, we were given the treatments, as what did we have to lose? Medicine would learn over the decades, that they could have the same success rate of remission, if not better, by using less radiation, and lower dosages of certain drugs, and omitting other drugs. The treatment plan used on me, is no obsolete. And the treatment plans today, as I said, are producing similar or better results of remission, just with less toxicity and lethality.

Major changes in support have also occurred over the decades. When I went through my Hodgkin’s, there was no Facebook or social media. I was not able to connect with anyone else who had gone through Hodgkin’s. I had a therapist I was able to talk to, but that was it. Today, there is a world wide web, connecting people with Hodgkin’s all over the world, talking about topics not just Hodgkin’s directly, but all of the sub issues that arise because of the cancer, such as financial support, fertility, and employment. In spite of family and friend support, please do not take this the wrong way, it is often not enough, because there is no way for family and friends to truly understand what we are experiencing. Today, there is no reason for a cancer patient to feel alone.

And perhaps the biggest progress, and maybe even the most important progress, is since Hodgkin’s survivors are living longer (I am in remission 34 years), some into the 40th and 50th years even, medicine has learned that for some of us, survivorship has come at a price due to the extreme treatments that we underwent. Again, I have documented often on this blog and in my book, the various late side effects that I developed as a result of my treatments. And as I always stress, NOT EVERYONE DEVELOPS THESE ISSUES! But because there is no way to know who will and who will not develop late side effects, it means that a cancer patient’s health needs to be watched, even after hitting the five-year mark. An oncologist should remind a cancer patient to continue seeing their primary care giver at least annually, using a guideline established by the oncologist and the treatments undergone, to figure the surveillence needed and how often, first establishing a base line measure for body systems such as cardiac and pulmonary. Information on potential side effects can be found on the Children’s Oncology Group page at http://www.survivorshipguidelines.org/ and also at Hodgkin’s International at https://www.hodgkinsinternational.com/ . I am not sure what the statistics are, with how many of us are impacted by late effects, as medicine has never really studied survivorship in this detail. Many may never develop any issues. Some may never realize issues they have are related to their survivorship. The point is, progress, driven by my fellow survivors are doing what we can to get the word out, to take care, and follow up for these potential issues as I deal with.

These thirty-six years have not all been about cancer. Sure, as an advocate, I made an active choice to help and support patients and survivors, albeit on a micro level, one person at a time with issues such as information, support, comfort, and direction. But I have gotten to experience so much in my life, not only not having anything to do with cancer, but in spite of having had cancer. My life has not gone the path that it was headed back in 1988, and there is no way of knowing how it would be today had I not had Hodgkin’s. I can tell you, my life has gone the way that it was meant to. It has not been smooth by any means. I had a great career. Took two swings at marriage (both ended in divorce). I am blessed with the most wonderful daughters a father could ever ask for. My daughters missed my Hodgkin’s days, but have been there through all of my late side effect issues and are the main motivating reasons that I am still here today. I have so many memories over these thirty-six years, again, some not so good, but others… wow. I have been all over the United States and twice travelled to China. I had the best dog for nearly fourteen years, who also played a key role in my healing.

The only thing about survivorship that is scary, is not knowing how much longer. As I said, I know many survivors well into their 4th and 5th decades. I know many “newer” survivors having just reached remission or some hitting their early milestones, one year, five years, and ten years. The hardest thing about my survivorship, are the many survivors that I have had the blessing of meeting, some are no longer here today. I think of them as often as I do the other survivors that are still with me. No fault of their own, their bodies just could no longer take the trauma that was done to their bodies, whether undergoing corrective surgeries, or perhaps a spontaneous event, left to be handled by doctors without the knowledge of how to handle our unique medical histories and exposures.

As I mentioned, I have a birthday during this season, next month. And I expect to celebrate that birthday, with my daughters for the first time in eleven years (because of the divorce), and I hope to have many more. Longevity does not bode well on the paternal side of my family, my father passing at the age of 70. The late effects and their impacts on my body may effect my longevity. We do not know. But I do not take any day for granted. I go to bed each night, with plans for the next day. And when I wake up, I plan on taking care of everything I set out to do the night before. And if for some reason, it does not happen, then there is nothing I could have done about it.

But my plan is to reach not only my 35th year in remission milestone, but the 40th, and perhaps the 50th. And if I am able to do that, not only will have more progress to share in the world of Hodgkin’s Lymphoma, but I will have many more experiences to share of my life as a father, and perhaps grandfather.

Here’s to 36 years!

The “Ultimate” Validation


I have actually tried to write this post several different times over the last couple of years, each time prompted by an event, either in my personal life, local news, or spoken by an acquaintance. No matter the story or situation, the goal is, or in some cases the comment was, “doing what they enjoyed.” Yes, ultimately these situations that I am referring to will end, or will end sadly and tragically.

The first prompt I started was a couple of years ago, following a tragic car accident, which resulted in the death of a sixteen-year old. Something that could definitely have been prevented, the teenager’s death was somehow validated because the teenager was doing what they enjoyed, racing their car. Excessive speed was the cause of the accident and the loss of such a young life.

At that time, with two teenage daughters myself, I cannot say that I was shocked to hear the attitude, that at least the teenager died doing what they enjoyed. But I definitely was extremely saddened that such a young life was not valued more, or did not have the belief or hope that there was so much more ahead of this young person’s life.

This is not a behavior limited to the young. I have known several adults, younger than me, who died following medical events, but the sentiments were often similar, “at least they were doing what they enjoyed.” As someone who has issues reacting to health symptoms in a timely manner myself, there is a possibility that some of these deaths may have been preventable with even some minimal medical intervention. But then again, to seek out a doctor for something that does not feel right, might just interfere with pre-made plans that had been much anticipated. So that when something does happen, the loss gets validated if it occurred when the individual was having their enjoyment. And again, those I am referring to, were all younger than me.

But to give in to this concern, health over enjoyment, in recent years, a new stigma had developed, called living in fear. “Don’t live your life in fear” was something heard often during the Covid pandemic, when we were warned to follow simple and basic precautions to avoid infection or spread of the virus that killed millions of people. Many pushed back quite vocally, “I’m not living in fear.” And of course, while many came down with Covid and got through it, likely not acknowledging how much they would have preferred not getting Covid after the fact, there are some who got Covid, and died. Again, those that I know in this situation, were all younger than me, and for all purposes, were in better health than me. But they were doing what they enjoyed when they contracted Covid. I just struggle to understand that their lives were only worth that much, having nothing further to look forward to.

And then just the other morning, a social media post shared by a fellow cancer survivor, and I want to add, a very positive-minded survivor, was given some difficult news as is often the case for myself and other survivors. While the news is not what someone wants to hear, I believe that my friend will continue to live their life as they always have, for whatever they have left. The reason that I believe that, was along with their news, a story was shared about a 104 year-old woman who broke the record for skydiving. I had seen the video before, but to see the joy on her elderly face during the free-fall and landing was definitely inspiring.

My survivorship has kind of been like a Charles Dickens story, with “the best of times and the worst of times.” The first half of my survivorship, barely giving any reflection of my battle with cancer, even as I provided support and advocacy for other cancer survivors, I never thought anything of my own history. But that changed in 2008 with the introduction of my first late side effect from my treatments for Hodgkin’s Lymphoma eighteen years earlier. I was not doing anything spectacular, just doing what I wanted, and had been ignoring symptoms. And having two toddlers at that time, I had a long life I was expecting. That had almost been taken away from me, all because I was “doing what I enjoyed” instead of dealing with my health, a.k.a. “living in fear.” It turns out, that I had been diagnosed with a “widow maker” of the left anterior descending artery, the main artery to the heart. While doctors do not normally refer to this situation this casually or crudely, the description could not be any more literal. When a blockage to the LAD gets to this stage, you have a fatal heart attack, and as the name implies, you die, at least without immediate medical intervention.

If you have followed my blog, which I started back in 2012, I got involved in a cancer survivorship clinic at Memorial Sloan Kettering Cancer Center where a battery of tests had been performed, and it was determined that I had a lot more conditions to be concerned about, which I have documented often here on “Paul’s Heart.” With more than a dozen diagnosis, and being watched for at least three developing cancers, many around me have expressed their thoughts to me, how “awful” it must be for me to have to deal with doctors all of the time, seemingly forever. And in the beginning of this stage of my survivorship, yes, it sucked. But what sets me apart from the others in this story (besides the other survivor that I mentioned), I am living doing what I want to do, and not in fear. I do have physical limitations these days such as the picture above shows. I took my daughters parasailing and as they begged me to join them, and oh how I would have given anything to do so, I had my 3rd heart surgery coming up, and to be stuck 300 feet up in the air in the middle of a cardiac event was not a memory I wanted my daughters left with. But I was left with the best memory of that trip, the smiles as they were being pulled back onto the boat.

There is an advantage to my situation, seeing so many doctors so often. They are helping me to have more time. And if something were to happen tomorrow, yes, I will be doing what I enjoy. But I have so much more that I want to do. If that means not taking any unnecessary risks (at one point, my bucket list had bungee jumping and skydiving), I know for a fact my heart gets all out of whack and takes a long time for it to recover and settle down, it is not worth it, because of what is still ahead of me is more important to me, if I can get there; my daughters’ graduating from college, getting married if they choose, and maybe grandchildren. The bottom line is, I am doing what I enjoy while at the same time, keeping my chances of the goals ahead of me.

And there is a reality. The side effects that I deal with from my treatments are manageable to a point. I have had three heart surgeries, and the reality is all three will need to be addressed again some day, likely within the next 5-7 years and I will have a decision to make, because the risks of a second intervention are extremely high and it is possible I will not take that risk. I am in the process of being diagnosed with lung cancer from a nodule discovered years ago, now large enough to be of concern. And there are two other areas being watched for other cancers. This is why I am focused on doing all that I can to get to those goals, not taking risks. I am making memories that I want as time goes on. And clearly I have had many more than I could have imagined. Even Covid has not prevented that.

But for those of my friends that have passed so soon, I often wonder, had they done the “downer” thing, and perhaps gone to the doctor for check-ups, would they still be here today, enjoying the things they do, instead of that last act, being their final enjoyment.

Understanding Labor Day


It is ironic, one of the most celebrated times of the year, a rite of passage if you will, whose roots were created by labor unions, those labor unions are often objected to by many, but not strong enough to turn back a last weekend of Summer down at the beach or a family picnic. Yes, Labor Day is the unofficial end of Summer for many, even going as far as to dictate fashion, “no more wearing white until the next mixed holiday, Memorial Day”, where we honor our fallen war heroes, and many just go to the beach to begin Summer. The bottom line thought, Labor Day is a recognition of the work force and the labor unions going all the way back to the late 1800’s.

Whether you are pro-union or anit-union depends if you are a member of a union, an owner of a business, a benefactor of the benefits you have negotiated in a guaranteed contract, a bitter and jealous employee with no union representation, and of course the stereotypes that accompany all the arguments for and against. I have been on both sides, seeing unions as disruptive and some times, the end of a business, and joining my first union at the age of 35, being guaranteed health insurance as just one of the benefits I was entitled to after being denied health insurance for the previous ten years, because I had cancer. Being part of a collective bargaining unit, I had to be accepted for health insurance. Being in a union and having that benefit, would save my life less than eight years later. Officially, I am a third generation member, the union I belonged to until retirement, the United Steel Workers Union. My mother and grandmother were members of the Electrical Workers Union. And I had an uncle who was a member of the United Auto Workers Union. And I have many friends in the AFT, the American Federation Of Teachers Union.

If I am being transparent, early on, and I do mean early on, as in my childhood, subliminally aware of my family members belonging to a union (my grandmother was actually an officer and my mother was a shop steward), I really gave union chatter no mind. I know that if I heard anything about unions, it was mainly the inconvenience that was about to impact our household financially, as a strike approaced. And then to influence me any further against unions, was a stereotype, supported by Hollywood with varous films. The first movie I ever saw involving the concept of unions, was F.I.S.T. starring Sylvester Stallone (if I’m not mistaken it was released after Rocky, which was the only reason I wanted to see the movie). But the union was presented as a bunch of thugs which is not something I can support. Hoffa with Jack Nicholson was another movie showing the negative side of unions. Then Norma Rae with the “Flying Nun” Sally Field came out, showing an empathetic ear to workers needing to have better working conditions. And more currently, North Country with Charlize Theron, based on a lawsuit for sexual harrassment in 1984.

Other than being an employee in my first union, I found myself in an unusual position of being a candidate for our local school board. This unplanned detour in my life came about, as my daughter was preparing to begin school, which was about to be interrupted by a teacher strike. And like many uninformed citizens, I was outraged by the inconvenience that was going to come my way, and like many of those citizens, do nothing about it except bitch. That is, until the school board candidates that were running for re-election did something I felt had crossed a line, taking out a full page color ad, publishing the salaries of every teacher in the district, a bargaining method against the teachers union, but blasting information meant to infuriate the community. And for many it did just that. But for me, having been through one contract negotiation with my current employer, I saw something that was not right. The board candidates were trying to negotiate in public instead of in good faith with representatives from both sides. Long story shortened, I call this a bully tactic which I did not like, and I ran for my first political race.

(picture courtesy of Sportster)

There often is disagreement in whether unions are good or bad. There are laws in place to guarantee the right to form a union. Famously, one attempt that got a lot of attention, and one could argue was needed, was for professional wrestling. Though it is considered sports entertainment, its risks and skills are no differently than other professional athletes. Yet, when pro-wrestler and former Minnesota governor Jesse Ventura secretly tried to organize a union, it was Hulk Hogan who went to WWE owner Vince McMahon and blew the whistle. Think about it. All Ventura wanted was better pay, and better health protections. But there is something that comes along with being in a union, its members are treated as equals. So, with the majority of other wrestlers making four or five figures, compared to one or two making seven or more figures, Hogan wanted no part of that, wanting his prestige. Forget the money issue, negotiated health care especially in a career that sees many of its participants crippled or dead by their 50’s or even earlier, their current status is left on themselves to provide their own care, if they can afford it.

In 1991, soon after completing my treatments for Hodgkin’s Lymphoma, I left my employer for a better opportunity (more money). Unfortunately, I gave up my insurance coverage by doing so, my new employer unable to cover me because of my “pre-existing” condition of cancer. But I was healthy again, so I was not worried about health insurance for the time being, and saw the new career opportunity to big of a chance to pass up. And then in 1997, and even bigger opportunity came up in a completely different direction than I could ever have anticipated, working for a major pharmacutical company. There would be one catch. Starting out entry level, yes, I was going to make double what I had been making, but I was going to be given health and life insurance, NO QUESTIONS ASKED! These benefits are given collectively, to all of its members. I could not be turned down even after all I went through.

There were things I would learn to like and dislike in being in a union. The hardest thing for people to understand, is that all its members are on an equal footing from pay to benefits, to opportunities for new positions as well as protections of job security, called senority. Senority actually led to opportunities for different positions in the company that could give individuals like me, with high on-the-job-learning-skills, the ability to apply for even better positions which of course with higher labor grades.

But the most important thing I gained from being in a union occurred in 2008, which I have written extensively about on this blog. My heart went kablooey due to damage from treatments for my pre-existing condition of cancer. Being in the union, had me covered with the health insurance I needed to save my life. From that day on, I needed that insurance as I found myself having to deal with multiple issues all related to that time back in 1988. Being in the union, at least I knew my health insurance was not going to let me die. So yes, I am pro-union.

My experience with the insurance end of benefits, as wel as rights of the American With Disabilities Act and the Family Medical Leave Act made me popular among my co-workers when needing support against company management when attempts were made to punish employees for health reasons. And because it was soon discovered that I understood the contract as easily as I understood health benefits, I was elected one of several shop stewards to represent my co-workers in my department.

There are people who feel very strongly against unions, they have their reasons whether they be misinformed or flat out selfish. Perhaps unions would not be needed if employees were paid livable wages, given health protections, heck, treated like human beings. A simple concept really, but I believe it, a happy employee is a dedicated employee, which can only translate to benefits for the company. I believe it is a false trope that unionizing causes prices to go up. Take any company that squashed unionizing who still raise prices of their goods, minimize manpower, and still come away with CEO’s making 350% more than their employees while making billions in profits. Look in some retail and fast food installing kiosks to do what a human once did all with the cries of a CEO saying this is what happens when you pay a worker more, laying off other workers and STILL raising prices of its goods, still making the same salary for the CEO and profits.

Labor Day may be the last hurrah for the Summer down at the shore, but to those who have represented and fought, for those in unions and not, this is what you can be thankful for the labor movement according to the Department of Labor:

  • The Fair Labor Standards Act, this is for wages and OVERTIME. It covers age restrictions under 16 years of age, and 18 for jobs deemed too dangerous. It limits hours for students during school days. And yes, it also covers laws in regard to immigration and nationality.
  • The Occupational Safety And Health Act (which is enforced by OSHA) which enforces workplace safety and health.
  • Worker’s Compensation, there are so many written acts covered under this, requiring employers to protect employees with an insurance for workplace related injuries.
  • Employee retirement benefits and laws for pensions and COBRA for health insurance and HIPPA for privacy rights
  • The Labor-Management Reporting And Disclosure Act
  • Employee protections such as the act of “whistleblowing”
  • Uniformed Services Employment And Reemployment Act which guarantees a worker to return to the job they left behind to serve their country
  • Employee Polygraph Protection Act, yes, evidently we need that
  • Garnishment of Wages protections
  • Family Medical Leave Act
  • Veterans’ Preference
  • Government Contracts, Grants, and Financial Aid
  • Migrant and seasonal aggricultural worker protections
  • The Federal Mine Safety And Health Act of 1977
  • Construction and transportation
  • Plant closings, layoffs, and postings

As you can see, there is a lot to be celebrating today, and to be thankful for those who came before us to fight for these protections, and to keep them. As for unions, they may not seem perfect, and they may not seem fair, but the benefits that come from them, far outweigh the way workers could end up being treated without them.

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